Dear Sirs/Future Family Members,
I’ve been working on my lists for a while now, and although I’m a little worried about forgetting something, I’m confident that I’ll do just fine. I’m including photos along with my lists as I’ve been advised to take space into consideration as well as anything that I cannot feasibly replace. I have hopes that my participation in this time capsule program will be both rewarding to me as well as my future generations, and that good will come of the lessons learned regarding our health in the 21st century.
I feel as though I know you already, and my excitement of “Opening Day” is hard to contain. I won’t be there physically, but you can count on my presence contained in this little box…
Ok, what do you think? I know, it’s a pretty long lead-in, but they let me know that paper is “king” and that what I had to spare in actual things could be made up in words (probably the wrong thing to say to someone like me, huh?). I plan on filling my capsule with as many words as possible, but do let me know your thoughts’ (I realize that I don’t have to ask – you will let me have it if I need it! You’re the best editor I know, Anne…).
Anne, I’m so happy you’re joining me in this crazy endeavor, and I know you won’t regret it! I don’t think our physical distance will make any difference when they open those capsules and I think only good can come of our time spent on this. I know you haven’t done well with this – Crohns isn’t an easy disease – and I don’t expect that you’ll be able to work on this every day. I want to help you and you won’t be able to stop me!! HaHa I know I have my issues too (Migraine Disease is so misunderstood, but I’m here to fix all that! LOL), but I think I can get at least one good hour or two in a day (one for me, one for you!! I want to show you my list – that way you can get a pretty good idea of what to send me on the days you won’t be able to compile everything. We’ll get this done – don’t worry. Here’s my list:
Ø Migraine abortives (a list, of course – how in the world can they expect me to GIVE them pills that cost $30.00 each! Ha!) and my preventatives. Since I’ve tried most of them – the anti epileptics, beta blockers, botox shots, calcium channel blockers and anti depressants – I may as well fess up and list them. (Note: go ahead and list your meds, too; I know you need them – don’t be shy here. After all, we’re sick and we may as well admit it!). Oh, and I will be including the spent boxes of the meds, so that may be something you want to include, too; there will be enough room for the flattened boxes.
Ø Ok, I’m also listing the “fun” stuff I do as soon as I feel better. This will include a picture of my bike (love it!), photos my hiking boots, fanny pack, camera and sweaty bandana! Part of this has to include my dog, since I can’t always be sure of when I can get out;Duncan is the perfect mascot and protector when my husband is at work and I get a shot at getting out (especially when I’ve been down for a few days – Amen!).
Ø Here’s one you can appreciate: a foods list. I know you hate to admit it, but how in the world will the ‘people of the future’ ever understand our plight if they don’t know what we can and can’t eat. I know we’re in the same boat, here so be brave and throw that food list in. I’ll be putting in what I can’t eat – I feel that this will be a great representation of how I plan my days around what I can and can’t have. (Again, you can list yours either way or by including both what you do eat and what you can’t. No one understands your illness like you do…).
Ø Next: I guess this part should have been included with the meds list, but since some of my “home cures” are a little unorthodox, I’m going to list them separately. My favorites (should I say, “favorite”? Ha – these are helpful, but last ditch efforts in themselves and I do feel depressed just listing them) will include: a glorified pix of my tub complete with the sight of steam rising from the almost boiling surface (not really Anne, but I know that you’ve heard me talk about how hot I get it, especially when the migraine – and triptans – have me freezing and in so much pain); and my sofa, with it’s hard arm where I lay my head so that a lot of the pain signals from those nerves in my neck get that nice numb feeling from the sofa’s pressure. This one really helps. Please list yours’ or send me the list and I’ll take care of getting them in for you, too.
Ø Ok, this is a tough one for me, but knowing that I feel that way makes it all the more important to list it: my struggles with doctors. I’m not sure if I’ll mention each doc and what they did (or didn’t do, I might add…), or how I felt about them. I know that I will talk about my feelings of losing my power with them, and of the hopes I had before my appointments. You know I finally gave up on them, Anne, and it was because of losing my power. I felt so often like a fake, and that I really should just, “suck it up” and “take a pill”. I hated how the doctors made me feel and I know it caused me to not even believe my own illness, even though I knew inside that I really was/am sick. I just couldn’t deal with the stigma anymore, and even though I still live with this illness everyday, I now at least have my piece of mind. I want to list how therapeutic it is for me to have a friend like you and all the friends I haven’t even me that also suffer from these migraines; they are better than any pill, doctor, or preventative and the reason is: understanding. Can you believe it? How can just being believed in and understood help so much. I still have so many headaches and uncontrollable hours and days, but being in our little community of “sickies” (Ha Ha – I knew you’d love that!!), makes all that stigma just melt away at times. Even though you and I share different diseases, Anne, I want you to know you’re still my “Sister ‘O Suffering”!! (I know, silly term but you know I love ya, Sis!).
Ø My last entry in my time capsule has to be the truth, and although I want to be positive – have to be positive – I must say it like it is: what I have lost because of this misunderstood illness (you jump in here, too, Anne…). I really hope things will be better some days, but you and I both know that we really aren’t “spring chickens” any more Anne. I want to list a picture of my college and of my hopes to finish as a Paramedic (helping other people for a change!); I want to talk about the days and time lost hanging out with my grand kids, and from there all the moments enjoying my own career, independence and money (there, I said it – MONEY!) I could have made. I can’t be honest if I don’t admit all the things I wish I could have accomplished, the feelings of being held down, planning every moment around the pain, and the time I lost and the desolate moments in between sleep when I have wept about it all. I do have a lot and I am blessed, and I really do hope for a cure or even a better treatment, but I know that funding is so limited and so restricted for migraine disease. I also know that I can’t dwell on all that I don’t have: I want to enjoy my time and I can’t stand the thought that I may waste the good days I do have with worry and regret. So I won’t!! You, either – ok? But please just let them know and try to make you capsule complete. They say that these “Health Capsules” will benefit someone, heck maybe many others – some day, so “let’s do it”.
Well, that’s it; here’s my list and I’m sticking to it!! (I know you love my humor, so just get over it girlfriend!!). We only have one week to get our items and lists in, so please let me help you (I know I already said it, but I’m saying it again, girly – I mean it, too) if you need it. I know there’s a lot of us out there, and I wish I could be “the fly on the wall”, so to speak! Really, it would be cool to know what’s in everyone’s capsule, but alas, you and I – and the rest of “us” – will never know. The capsule people told me, though, that our grand kids and family members “of the future” (funny – but that’s how they worded it to me) would have “guaranteed access” to all the info and objects we place into our capsules so to me, it feels like a little present I’m handing down to them – almost a momento – from me to my future family. Maybe it will help them in a bigger way and some of the suffering you and I have encountered will never have to happen to them. Maybe even a cure because of us…
Can you believe it, Anne?!
Paula March, 2012; 3:04 P.M.
I have so much to say to you and we have so much to catch up on! I want to let you know that I have recovered in a way I never thought possible. All the bad health, all the stigma – it’s all in the past now. If I’d have thought that ending migraine disease (as well as asthma – I know, I never told you that I had “that”, too! I don’t think I wanted you to worry over me any more than you already did, ok?!?), was in MY future, I don’t think I would have really believed it. I may have said that “Sure, a cure may be in my future”, but inside I don’t think it was much of a hope for me.
Well, those days are gone. Once we got the hearings approved, it seemed like it was just a normal progression to each next step. The funding came through, and grants – then the actual backing that we really needed: more and more of the famous, politically powerful, and quite a few stars, I might add, all jumped on our cause. It wasn’t over night, I would never try to make you believe that; but it was faster once the ball got on the roll (so to speak – I hate dumb clichés, but you know me!).
Please know that – drum roll please – Crohns is also a thing of the past! There, I said it! The discovery of inflammatory responses and the interconnectedness of all those disorders led to a spread of knowledge that anyone would call miraculous! You would be so proud (and so healthy now…).
I don’t want to go on and on, but a very special thing happened on the way to all these changes/CURES. And it was: meeting my family! Anne, they are the most wonderful people in the world! Of course there’s more than I can count, and I do have a difficult time keeping up with all of them, but I do have my favorites. Kelsi is 12 now and Aaron will be 8 in May. These two are the light of my life; they’ll never have to struggle, either with migraines, asthma, or CANCER! The cancer vaccine has been around about 34 years now, and all that’s required is a vaccination for prevention. If cancer is discovered, the treatment now consists of mere weeks of intense light without pain or sickness. The technology is a little more advanced than that, but you get my drift (there I go again – sorry)! My little Kelsi & Aaron’s future was sealed about 40 years before their birth; genetics now play a big part in migraine prevention and epilepsy is also old history (Yes!!!)!
Do you remember all those pictures and words about our health that went into those little capsules? Well, I’ve seen them all; yes – I’ve seen them Anne, and I’m here; it is spring, 2112. Please understand that what we and thousands of others did that day, really did make a difference. It wasn’t so much as what was in the capsules as what we put into teaching and getting our words and thoughts out there while planning them. All our voices and work to make our conditions understood were the defining factors in how the world felt about those diseases. (Remember getting everything ready? It was a crazy time, for sure!) The work that we started just to build a little time capsule got us moving, Anne. Although the cures didn’t come along for a while, the fire that was started in us as we thought about our health missions and capsules started a few million sparks out there! The rest, they say (again, sorry!!) really is history.
I want you to know, Anne, that everyone in your family is also – beautiful – just as you were. Your great(4) (this is how generations are referred to now that our median age has changed!) grand kids and mine play together, attend the same schools and share in the cures we and others like us, started. To say that you would be proud just doesn’t fit how you would feel to just meet these kids one time; they are lovely and remind me of you every minute.
How I miss you,! It has been so long, yet as I sit to write this, just one week after our capsule’s grand opening, I get the sensation of you being right here with me, still planning our next health move. Please know that your determination and support helped me even after your passing; 50 years is a long time – even now – and I still miss all of our moments together, even the “challenging” ones! HaHa (I can see you laughing as I synchro-type now).
As I reach 149 years of age, I celebrate my time and I realize that us “Capsulies” really did do good work; we helped more than a generation: we saved our own familes.
Can you believe it, Anne?
Paula April, 2112;2:26 P.M.
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