Archive for the ‘ALS Progression’ Category

What is it to be alive?

Sunday, November 14th, 2010 by annemarie

What is it really that determines if we experience being alive? What elements have to be there? What’s non- negotiable and does that change? You bet your skivies it does!

Just in the 6 weeks or so that I began taking notes on this question my own non-negotiables have changed. I was originally looking at how many activities can you loose and still feel like you are living? Then I got REALLY tired, and my breathing became more shallow. Things took longer, alot longer. I began minimizing my movements, avoiding trips out of my home, meetings were held here etc. My world is shrinking, my ability to type is slowing down…I haven’t yet gotten to 1/2 the wellness things I’d like and now fear I wouldn’t live through them~ ie. having all my amalgam fillings removed etc.

I need support breathing and am going for a pacemaker for the diaphram if I can, hopefully I won’t be too late to be effective. The thing with ALS is you don’t need something til you NEED IT. I think I’ve been lulled into a sense of complacency given the relatively slow progression of my disease. So what began as an inquiry about what it takes to feel fully alive is now quite frankly a real time look at what do I say it takes to keep me in the fight. What must life provide such that it is worth participating in…? This is a more macabre twist than I was searching for!

Now, I fully believe you bring to life what you make it, and this was meant to be an articulation of that thinking…more along the lines of “if you cant eat dinner out how can you participate and still be a part of it”, but now I don’t have the energy to care. Whoa. There I said it.
That’s a state change people. So I’m alive. Not quite satisfied with how that looks right now, but I’m alive.

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Food Glorious Food…

Thursday, October 28th, 2010 by annemarie

I’ve been struggling with how to convey the loss that eating is for me, as a somellier, a foodie with an adventerous palette…I’ve been priviledged to experience some of the best food prepared by the best chefs from my area in my time. I love the beauty of a well balanced dish. Taste. Texture. Presentation. Scent. I love every aspect of the art of cuisine. I also love traditional ethnic foods from all corners of the world, one of the reasons I loved Chicago so much is our access to real downhome cooking from all corners of the globe.

I also loved to cook, experimenting on my own. I weathered the loss of that habit, my bi-weekly if not daily cooking forays, albiet with annoyance as my hands grew weaker. But this is nothing compared to the loss of the celebration that eating is…the impact of not eating is a whole new ball game. Perhaps it’s the season, Autumn is my favorite time of year and the harvest combinations of sweet and savory are my preferred playground of taste. But eating isn’t just a habit that I’m putting aside, its a whole world of wonder, taste and magic that I don’t get to play in anymore…a world of tradition and family memories, a full color world that just went black and white with shades of blue but no true vibrance.

I have visions of me tasting soups and sauces in lieu of an entree as a treat in my favorite restaurants. I can’t always get soup down but sometimes I can, and pie or icecreams, pudding and gravies are good so far but most of my intake is through the peg tube now and smells like chocolate or some of the fresh pressed juices I can filter for the gravity bag. I’m only a few weeks into it and I’m sure over time my longing for favorite foods or dinners out will increase. I feel like I’m on the tip of the iceberg here and there is much more to come…I guess I keep expecting to be more “depressed” than I am about the loss of the ability to experience food.

Though I hate to use the word depressed as I believe it’s a label others(read physicians) are so eager to throw on me and I maintain I’m not at all depressed, though I get really pissed and upset from time to time…and rightfully so I believe. In any case I am waiting being more acutely aware of the loss of the ritual and sensory world of eating. I’m sure I’ll have some tale of woe…SOON!

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I’ve become Pig Pen!

Wednesday, October 20th, 2010 by annemarie

I swear to GOD it’s true…I putter around my apartment going from task to task making mess after mess after mess! I am constantly dropping things, spilling and over all reverting to a terrible 2yr old mess maker with all the annoying embarrassing afterglow provided by actually being an adult. Hmmph.

I have created 2 wardrobes- go out clothes and stay home clothes, most of the latter are disposable, comfortable and easy to pull on and off: even for me. It’s interesting to see how much stuff becomes meaningless when you can’t help yourself from making a mess…and how many cleaning products find their ways into being prominently and handily displayed in the home.

Today I start the process of redesigning the layout of the apt to accomodate more people and more equipment and workspaces for me. Hopefully we can makeover the space into a less mess-up-able layout and one that still provides an atmosphere of healing. Every time there’s a change in capacity there is something to reorganize~ same if your capacity expands or if it contracts!! AND change itself always causes upsets…Life is Messy…get into it!

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Thursday night I fell…now I’m standing on shaky ground

Wednesday, September 29th, 2010 by annemarie

I haven’t fallen in over 6 months, mostly due to how I manage my rest and avoid over extending myself. Unfortunately I had a few more appointments than usual this week, including one that I showed up for that didn’t happen…and I was just pissed at myself for not reconfirming ahead of time! And I was feeling a bit overextended. Couple that with a schedule shift on Thursday and a speech early on friday…and I was POOPED after my thurdays massage. So I walked into my home and with in 5 minutes did a faceplant into the carpet! Complete with rug burns on my face, under my left eye. UGH.

I felt my neck crack as I hit the ground …I hit the floor with my right knee and left cheekbone and temple and for the 1st time thought “I wonder if it’s time for life alert?” I had had my phone in my hand so it was near me, and as I did a mental checklist feeling my body from the inside out to see if there was a serious injury…all I can think of is “If I have to go to the emergency room I’m gonna have a helluva time getting up and ready for my speech tomorrow morning”. After I realized I was shaken but not broken, I calmed down and rested on the couch before going to bed early. I put my thoughts and concerns aside to be dealt with after my speech on friday.

As I’ll blog about later the speech went great ( other than being late due to rain and a dirth of cabs at 7:30 am), however my mindset took a nose dive into the abyss over the weekend. I found myself being lethargic and completely stopped regarding my productivity as well as hyper-emotional. I slept a good portion of the weekend and my ability to focus has been disrupted by a concern and mourning the death of my independence. The emotional impact of not feeling safe at home in my sanctuary drained me. “I’ve fallen and I can’t get up…” almost happened to me. BLECH.

It’s time for a shower chair, a further abbreviated schedule and seriously curbing the number of meetings I’m taking. So- I combined a training class with another course in session to free up Mondays again. I’m back to a sacred 3 day weekend. I feel like I’m a yo-yo: one step forward 2 steps back…and pushing myself is getting me no where. I’ve been faking it til I make it all week. It’s time to re group to re-re-re-prioritize. It’s odd to be talking to others about expanding their capacities and structuring their lives to handle more activity while experiencing a shrinking world myself. This constant retreat is a pain in my attitude.

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VIVA Interdependence! Creating a Share the Care Plan

Sunday, September 12th, 2010 by annemarie

Oy vey. One thing I SUCK at. Asking for help and assistance. I’m too little too late most of the time. I got a bad case of the “I think I cans” and the “I’m fine on my owns” and all that ain’t neccessarliy so…

The truth is it’s time. I need help with some things: opening bottles and containers everything from hot chocolate packets to bottles of juice. I now need help filing and cleaning my nails. Dressing in many of my clothes has become a joint project, forget making the bed and opening the mail! I’m all about delegating that. So I’m thinking of having someone come in for 30 mins to an hour a day to handle all that jazz and call in a carryout order for fresh pressed veggie juice as I’m not even pretending to use my juicer anymore. Maybe we can throw some physical therapy in there while we are at it? We’ll see.

At my Doctor’s appointment It became clear my thumbs are aching from tendonitis because I’m trying to do more than the muscle can handle~ I’ve already begun to switch over to thinner lighter bath towels I guess I need to buy more. My house keeper comes 1/wk and my assistant graciously helps pick up things and do light cleaning before we meet, but I think it’s time to give up on “I think I can” and embrace being interdependent. Maybe even consider enjoying it…maybe.

I am loathe to give up my privacy and the solitude of my home. The idea of having an appointment everyday to handle mudane chores exhausts me…perhaps we’ll begin with 3 times a week. I think I need to ease into this as helpful as it maybe…I’m having a hard time letting go of my independence…apparently I’m a bit attached. I think I have it confused with or collapsed with invalid…in-valid…as in not capable or valid as a human being. Since this makes me cry I’m sure that’s the heart of it. I can see I’ve been dreading this day, making it mean something it doesnot mean. Afterall it’s not personal, it’s just what’s wanted and needed to maintain a particular standard of living. I have given my parents the homework of reading Share the Care : How to organize a Group to care for someone that is Seriously Ill, by Cappy Capossela and Shiela Warnock. I however have avoided getting to far into it.

I know people want to contribute and I need to let them. It will enrich them and me…just gimme a minute.

Viva Interdependence!

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Stepping Away from my Identity

Saturday, August 28th, 2010 by annemarie

So as you know I have been an inconsistent blogger recently, I took a break on my recent vacation as I entered into an inquiry with myself regarding my identity…my concern being that I have now been indentified so closely as ” having ALS” that it may be interfering in any opportunity I may have to heal. As I spent my vacation delving into research and reading about “healing beyond the realm of reason”( see Caroline Myss, Defying Gravity) and other alternative ways of looking at my condition; including writings from people who say they have stopped the progression of ALS in their own bodies: I was confronted by the extent to which I have been profoundly resigned about my condition/ALS/diagnosis.

I, who keep saying, “I’m not buying what they are selling…” had indeed bought much more of the farm than I thought I had! My resistance to engage in the thinking required of someone out to alter their cellular environment was shocking to me. The depths of my resignation was undistinguished until I began to shine a light on it with this inquiry. The meditations were difficult as I bumped up against the diagnosis and the label of ALS and wha.t it had come to mean to me. When I was young I used joke and say “Labels!” with a snort of disgust… as if one could capture the essence of someone or someone’s work with a label. PALS or person with ALS, had become a label for me that I found restrictive as I am SOOOO much more than that. Folk singer is to Bob Dylan as PALS is to me; and I found that it interfered with my ability to HOLD A VISION of healing and being complete with this challenge in my life.

I have chosen to look at my situation from a new point of view, as if I had never heard the words incurable/terminal etc and see the possibility of healing newly, with new eyes. Not some woo-woo “Magical Thinking” sort of realm of possibility but in a real live palpable restorative nuitritional spiritual focus of “This shall be!” type of possibility. I am willing to entertain and put my faith in the fact that science doesn’t know everything here, indeed it may be blinded to what’s possible by a limited paradigm. I keep having a vision of a treatment center that combines the latest technological advances like the pacemaker for the diaphram with the alternative treatments of biofeedback assessment, homeopathy, diet, cleanses and removal of mercury/amalgam filings in the mouth etc…as a pathway for treatment for people labeled with ALS. Personally I’d like to try HGH or human growth hormone to see if I can restore some balance and muscle function in my legs and hands. I want to remain independent for as long as possible and infact work to regain what I’ve lost!

While in California, I exercised more than I have in a year, in the pool, doing tricep dips on the stairs of the pool, walking laps around the resort watching porpoises play daily off the coast not more than 25 yards away at times. My whole relationship to my body and what it can and cannot handle altered on this trip. During my 1st week back I can feel myself slipping back into habits that reinforce weakness versus bolster my stregnth…This inquiry has been a good one. I am redefining myself and how I am “acting”. I am unwilling to play the role of “suffers from”, I want to play the game of “recovers from”.

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Being with what is…

Sunday, August 1st, 2010 by annemarie

I sleep on my side to facilitate breathing. I lie on my hip and the bone digs into the flesh beneath it, causing the bottom leg to go all tingley. In the morning the side I’ve slept on most will feel like I’ve run 5 miles becoming stiff and sore. Calf muscles cramp and over a short time shrink noticably ~ I’ve lost 2 inches on my left calf this year. My once shapely and enviable calves have an odd angled sloping appearance.

Where I used to have muscle I have tendons and thin whimpy muscles. Though I weigh less than I have in almost 20 years I have a pouchy belly. The last time I was at this weight I was ripped! Now I feel like I’m skin, bones veins and nerves with the remnants of my muscles hanging on for dear life. There’s not enough muscle to protect the nerves from being compressed by my body weight as I lay or sit down causing hips and arms to fall asleep…even though I angle the pillows and stack them up to elevate my upper body for better breathing. I want a pace maker to stimulate my diaphram…I wonder what the wait is to have that experimental procedure or who I need to know?

My hands are the most noticible new weakness: opening doors is a chore and elevator buttons take a knuckle or palm not a finger now. Typing is tricky. opening mail is impossible and turning pages of my beloved books is an adventure. I just started dropping books repeatedly when I read as my hands can’t hold them steady even against a pillow. I am in a race to write …get it down get it down…I know there are new ways to type with toes and I practice hoping my legs will outlast my arms. Noticing this can can spin me into overwhelm and I have to ratchet up my little miss empowered mojo to keep from going back to bed and staying there.

Soon I’ll need all my meals prepared by someone else, and fed to me as well. Last week I was in a restaurant and the soup spoon was too heavy for me to use through the whole bowl, it exhausted my hand! Time for packing plastc portable utensils. My walk has become a kind of march, where I depend on my stronger right leg as I slap the left one down for a step forward, Left Left Left -right Left! Like a baby giraffe…at 5′3” there should be nothing giraffe like about me. I have been unsteady on my feet in general, using the walls and tables in my apartment for support. Getting up from the couch is now an occassion for concentrated effort. My indepenent days are coming to an end.

The % of energy it takes just to navigate through a day is growing to the point where I must judiciously parcel out my time and I often cannot make social engagements at the day’s end. Now when I have really good ideas I look to see who I can give them too lest they be lost all together. All my trips must have more than 1 purpose whether it’s travel or a trip to the office 5 blocks away, or it’s just not worth going out. So this week I go to Detroit to plan a fundraiser, train a program leader for the Master Plan and see an alternative Doctor…Last year at this time I felt great. I had just done a rawfood cleanse in May and HAD STOPPED THE PROGRESSION OF MY ILLNESS. All the muscle twitching was gone, I am wondering if I can turn this damn thing around again…
I gave up coffee this week so I can go to the 90% raw food again with no headaches from caffiene withdrawal. I think it’s time to find out!

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Ode to my calf muscles

Monday, June 7th, 2010 by annemarie

Dear Calves~ thank you for your service! You’ve always been mighty!
The kind of calves that got me noticed in the gym, and many many requests for ” How did you get those calves?” The answer of course was genetics plus point shoes at 12 years old…I could say the same for my glutes and hamstrings which were also remakable but not quite the stars like my calves were.

I say were, because this week I noticed how different the calves are now – this is a new development just in the last 4 months, my calves are suddenly angular, linear where they were curvaceous. My legs are noticibly weaker, I have begun to fall from time to time. The balance muscles are going~ the anterior and interior ones that keep you upright over uneven ground are leaving me. Just 2 months ago I finally stopped wearing real heels…as in 3-4 inch heels. Much to my doctors distress I had continued to wear them for 3 years after they advised me not to… but it was actually easier to walk in them due to the 1st signs of weakness in my left calf being along the shin bone and responsible for the flexation of my foot, so as my foot drags in flats I was more susceptible to falling in flats. I still look for a shoe with a 1-2 inch rise, because it helps me walk. Thank god the elevated sneakers are in vogue again! Spoken like a true shoe collector I’m clear… I have given away over 100 pair of shoes through out the past year as they became unwearable.

The curve is gone the cut up the middle of the back of my calf is gone, I miss the shapely-ness of it- the-no-matter-how-fat-I-got-I-still-had-great-legs-count-on-ability of it, the stregnth of it~ these are the legs that could squat 425 lbs in my mid 20’s ( which is probably why I have walked under my own power for so long), the extraordinary look of the well formed muscle tapering into the slim ankle…I would have been a hit in the late 1800’s when a well turned ankle was the bombdiggety of attractiveness! It probably says something about our culture that what freaks me out with the most emotional impact is not the reduction in my breathing ( though I wont go swimming again!) it’s the muscle twitching in my face, the screwed up facial expression I get whenever I drink wine, the drooling that becomes increasingly difficult to control, and loss of the muscle groups I could always count on for attractiveness. Forget looking good I’d just like to pass for normal! Which is hard to do when your ass falls off! Yes my formerly righteous bubble butt is gone as well…let’s just say that my nick name in highschool was “buns” and Boom-Boom.

Whats really amazing is how attached we are as human beings to our identity, or to how we have come to know ourselves…I can be as transformed as I want or as philisophicallly grounded as I want AND it does not prevent the IMPACT of the LOSS of who I had known myself to be! How I knew myself to look, and other constructs that became how I got along in the world. I have known that the physical structures in our environment set us up for how we move and manage ourselves but I was always looking at my SURROUNDINGS in regard to that and rarely if ever looking at my interior physical structures…for what they provided in the realm of my mindset or what I felt was possible to achieve, and how I percieved myself in the world. I can see new levels at which I took my body for granted.

Ignorance is bliss has a new meaning…I continually get irritated with strangers who are having superfluous conversations or are gossiping. Really? I think THIS is what people spend the minutes of their life on when they dont have an issue or a challenge or a focus? WTF? For the same reason I don’t watch the news often as I find much of it to be LEGITIMIZED GOSSIP and speculation and rarely any real news. Certainly not positive news, and I guard my optimism with a fierce vigilance. I don’t need the poison thrust on me from some deliberatedly dramatic headline or some ridiculous fluff involving some celebrity gone to hell in a hand basket. I’m not saying having a cause or a purpose is any better, it’s just what makes it all worth while and interesting. After all you know what they say about an unexamined life…definitly NOT worth living.

So I celebrate my calves today, for all that they were for what they still are and for all they will continue to provide! Take a moment and celebrate your own won’t you? Have a love fest with your whole body in fact! Appreciate what you’ve got when you’ve got it. Take care of it and hold it dear, value it and give it rest. You never know when you’ll need those reserves of energy and stregnth.

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Opposable Thumbs and visualizations

Sunday, May 16th, 2010 by annemarie

Remember what an evolutionary bonanza opposable thumbs were? The thing that separates the primates and homo sapiens from the lesser organized lifeforms…

Well I’m de-volving. Despite my best efforts. This trip to DC highlighted some of the creeping deterioration I’ve been avoiding facing up to here in my comfy home. Over the last week I have repeatedly strained my thumb on my right hand, running from the wrist to the thumbnail, the muscles are now so weak that I can barely handle a towel out of the shower and am unable to open water bottles and the like; even lifting a fork makes my hand shake. It’s the Number 1 reason I won’t be traveling alone from now on. It’s too difficult and fatigue inducing.

I had been hesitant to write about what I see happening in my progression, but I recently recieved an email from a young woman who thanked me for doing that very thing. She had lost her father to ALS, and one of the things she didn’t get from him was how the whole process occurred for him internally. Her note reminded me of why I am blogging ~ to tell the truth about the experience of living with ALS in all it’s facets. The good the bad and the ugly.

A few months ago I had to give up food prep, and beging having cooking parties or dates with my family and friends. It’s actually been really nice – even when I only have the energy to sit in the living room while they work in the kitchen. My Dad was over yesterday and he did all the chopping for one of my famous batches of Black bean soup. He also supported me in my weekly or bi-weekly, Stanley’s Market, Whole Foods and Karyn’s Fresh Choice~ the go to Raw food restaurant in my area. We got Peonies for the table and stocked me up for a few weeks on fresh fruit and veggies and herbs. I’m making scallops in a white wine garlic sauce with fresh basil today and romano cheese over a sundried tomato linguini for brunch. At least I can stir things and plop them into a plate! I am determined to enjoy eating as long as possible!

My swallowing has been more and more tricky, I’m coughing and gagging more which makes going out to dinner a bit of an embarrassment, but I do it anyway! At least every other week, I’m out for a meal I couldn’t make for myself…even if it’s just dessert and coffee. I remember the day I found I could no longer eat oysters. About a year ago I was at my favorite restaurant Naha, and there were these amazing oysters topped with caviar and some kind of infused creme fresh, I was so excited and then they came and I couldn’t chew or swallow them! ARGH! I about cried. I was sitting with the owner at the time too! Thank God he’s understanding, and didn’t make me feel embarrassed about the whole thing. Whew.

Times like those are why I make myself go out when I can now, I’ve heard Roger Ebert talk about missing food, as well as ALS patients when they tranfer over to the Peg tube for sustenance. As a foodie and semollier I want to have alot of happy food memories to get me through what ever times are ahead with out the experience of eating. I realize it’s not the worst thing that could happen but it’s a loss right up there with speech for me.

My last report of loss of function is in my walk – I’m now almost always moving with a perceptible limp and my cane is getting used at least 3 times a week. What an ass pain. I have this game I play with myself: Be as well as possible, function as well as possible and focus on what’s working and what there is to celebrate about my health as much as possible each day. I am always focused on moving towards health and a full recovery. I dance in my apartment to club music from a DJ my houskeeper records for me! I visualize having the stamina to take long walks up and down the lakefront again. I visualize lifting again; especially now that I’m notincing a weakness in my back muscles~ the twitching just began there in my back 2 months ago, and so it goes…

I am committed that my visualizations and focus on health, and moving towards full health will at the very least slow the progression of ALS in my body, and give me the opportunity to heal. I may not have opposable thumbs but I do have my superior intellect and I’m using every drop of it!

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ALSA Advocacy Days report:

Thursday, May 13th, 2010 by annemarie

Well it was interesting I’ll give you that. I met some remarkable and brilliant people. People who are doing their best in a sincere way to make a difference. I met 2 ANGELS who took care of me on my flight home. Who knew ANGELS lived in Evergreen Park! But they DO!

I had the opportunity to reconnect with old friends, meet new committed and inspired people and thoroughly enjoyed being in our nation’s capital.

The ALS Association doesn’t know it but I went there to this conference to see how they operated and to evaluate wether or not to fully get behind their fundraising efforts…(especially since several friends of mine are doing the upcoming walk in my honor) frankly I was not overly impressed with the organization as a whole. There is a lack of continuity and accountability in their speaking, no clear promises or objectives with deadlines, and a penchant for not answering questions in a straightforward fashion. The frustration of the patients present with the lack of results was palpable. There was also alot of numbers being thrown around that didn’t quite add up, and the feeling that some leaders of ALSA were unprepared for their speeches. This isn’t just my opinion but was a sentiment echoed by presenters, researchers and attendees alike. It seems that they would benefit from a tightening of their focus, and standardizing the efforts of their chapters, or at least offer folks some structures that would support them making a difference in their communities. If you are listening ALSA~ I have some ideas for you that would make a difference: especially in the areas of planning, structures that empower people and also patient services. I know you don’t mean to be disrespectful or appear lethargic but you do none the less, especially when you appear to be unprepared. I dare you to contact me and create a new way of operating. Just so you know this is my area of expertise… I used to be personally accountable for the productivity and performance of over 300 volunteers in a 7 state area and produce 25-70 events per week.

Having said that there were pockets of brilliance: ie. the St. Louis Chapter’s Respite program for Caregivers was extraordinary and a perfectly replicatable model that could and should be implemented throughout the country ( More on this later!) and the Chicago chapter has an effective fundraising arm and they occured as one of the most organized chapters. I was informed by many of the breakout sessions, and particularly interested by the brain research being pioneered by Theresa M. Vaughan at the Wadsworth Center, NY State Dept of Health and Dr. Melody Moore Jackson at Georgia Tech, as well as the research in the cognitive impact of ALS by Beth Rush from Mayo Clinic in Florida and the extraordinary work of DR. Micheal Benetar and his team at Emory University in the area of Familial ALS. The 10% of ALS patients with FALS appear to be underserved in many ways and Dr. Benetar’s team is looking at ways to impact this as are several families who I had the profound priveledge to meet with.

All in All, I’m glad I went. It was my last independent trip to be sure, and it took more energy from me than I thought even though I allowed time for rest and restoring myself. I had a few great meals, some excellent Champagne~ Drappier Grand Cru 2000, some delish mojito’s and better company.

Here’s my take on the fundraising: Walk the walks… I understand the importance of doing something ! I’m just saying take a look at where the money you raise is going… ear mark it for research, or respite or whatever your interested in, you have that right. Tell then what you want them to do and then hold them accountable for doing what they said.

I am looking forward to creating strategic partnerships with many of the people I met at the conference.

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