Long time no read

First the good news. On Sunday I went to my best friend Saira’s baby shower — in theory she had plenty of time to wait still and I think they’d just (almost) finished their baby renovations days before. But theory with babies is just that and the next day she said to Michael, “I think we need to go to the hospital”, and not long after a little four and a half pound healthy baby girl was born that they’ve named Kiran.

The bad part of my entry is not unexpected (other than, as with the baby, in timing), and it’s why I have to apologize for not posting very much lately, and unfortunately I think that may well be a trend that stays that way. I’ve hardly been able to do anything for the past month, being bedridden for the majority of the days, just barely able to drag myself up and “activate” for the times I need to be there for Nefarious. I think it’s been particularly difficult because the pain and weakness in the muscles surrounding and including my shoulders becomes more pronounced as the dystrophy spreads there (something I’d been warned was already showing up on the tests, so I knew it would happen some time). Having the problems in my arms as well as my legs make everything dramatically harder, not just because you can’t offload strength tasks from your legs to your arms, but because it creates a whole-body malaise that’s hard to shake, to say nothing of pretty much everything being so painful, tiring, and physically difficult that after only a few minutes of work or activity one feels very overwhelmed with pain and nausea.

Getting back to the baby shower, even though I didn’t feel up to going, I really wanted to be there, and I did manage to make it. However, about ten minutes after Caitlin, Nefarious, and I arrived, I started feeling more and more horrible, and told Caitlin I had to leave and asked her if she could find me some plastic bags in case I was going to be sick in the truck. I made a hasty escape, but not hasty enough, and stumbled only to the door of the truck before I started projectile vomiting — something that’s rather embarrassing to be doing on a pleasant Sunday afternoon on a quiet residential street (thankfully it rained not long after). It took me a few minutes to gather myself before I could crawl into the truck and slink out of there, stopping once on the 90 second drive home because I didn’t feel safe. I’d thrown up my only meal of the last week, half a crepe. I lay down and barely moved for the rest of the day.

With all of this having gotten worse and worse over the past month, I could have sworn I was moving into my final days, or at least wished that I was so that the pain would end. Other than the guilt of leaving my responsibilities, I have no fear of dying, and am very aware that it’s the part that leads up to dying that’s the part that sucks. I imagine that dying is the easy part and don’t give it much thought. But anyway, I spent a week not even being able to hold down water if I drank it too quickly, and completely unable to eat, with even pills being difficult. The good news though is that yesterday I managed to eat a quarter of a bowl of rice and vegetables and felt pretty good for it, and I’ve been trying to drink fruit smoothies since I can’t hold down anything else. I still feel horrible but not as horrible as I have been, so I think I’m on an upward curve again. I feel like I’ll be able to eat a little tonight, and I’m drinking a strawberry/banana smoothie right now to get some nutrients and energy.

Nonetheless, I know that this is just a temporary lull and the odds of things getting better in any big picture sense are extremely low. With less and less strength available to me, it’s quite likely that I’ll be posting sporadically at best. Don’t worry, it’s because I’m investing my energy in living as well as I can, rather than investing it in the internet. Don’t get the wrong impression — my life is still a happy one, all things considered, and were it to end tomorrow I would still feel blessed.

I am however getting very sick of what feels like lying around here waiting around to die, and within the constraints of my responsibilities, I feel like there are things I can still do to make the most of my time, and more importantly, maybe inject some life into me that the medical industry seems unable to find. Before my legs gave out I wanted to walk across the country (something that a Google search tells me a remarkable number of people are doing). I do still love driving though — for example when I picked up Caitlin’s Mustang from the shop today it was very freeing being able to move easily and feel strong by proxy through the car — and I’d love to rent an RV for the summer. Or longer. Or moving to a beach in Costa Rica. Or something… anything other than waiting around to die.

Finally, I wanted to apologize to folks for not replying to my emails or comments or messages as much as is reasonable. Every day I get really wonderful really heartfelt and really touching messages from people from both the distant past and the present, and I just wanted to say that even if I don’t reply I do read all these emails and I can’t begin to tell you how much they mean to me. Thanks everyone.

cars

42 Comments

  1. peteD3 wrote:

    ever since APP/vegas i have lost track…

    stay strong man and keep being that awesome dad!
    and thank you.

    Tuesday, June 1, 2010 at 12:27 pm | Permalink
  2. Do what makes you happy Shannon. Something we all need to do more of in this world. None of us know how much time we have left… so live the hell out of it.

    I can relate a little on the pain and loss of mobility, haven’t pinned down my issue yet – tossing around the idea of fibromyalgia and lupus but nothing conclusive. I have bad days where I won’t even leave my bed… I’m just glad that I (like you) have people in my life despite it all, that love me.

    Tuesday, June 1, 2010 at 12:30 pm | Permalink
  3. chris wrote:

    Shannon, good luck. I too have pretty much lost the ability to walk or stand for very long. My only reason for not laying in bed and giving up is my four children. I take drives with them every night and play with them while I’m mentally screaming in my head from the pain. Ari is blessed to e raised by you and Caitlin. You can always see how happy and full of life she is in her pictures. You should be very proud for what you have done. Not a lot of other fathers would step up and devote their whole time and life to their child like you do. Blessings to you and yours.

    Chris

    Tuesday, June 1, 2010 at 3:33 pm | Permalink
  4. Rebecca wrote:

    Sending lots of positive thoughts and good energy your way!

    Tuesday, June 1, 2010 at 4:40 pm | Permalink
  5. Best wishes Shannon. You’re one of the most influential and inspiring people in my life. You introduced me to body art. You reunited me with my best short story lost long ago. And whenever I’m feeling like life sucks and I’ve failed; reading your journal here gives me hope that it’s not too late to be magical.

    Tuesday, June 1, 2010 at 4:55 pm | Permalink
  6. wlfdrgn wrote:

    Have you tried the newer versions of Dragon Naturally Speaking? They’re not perfect, but they’re good enough, finally, to be workable. May help to stay on-line, rather than laying in bed, or even stay on-line while laying in bed. Anything to kill boredom.

    Tuesday, June 1, 2010 at 5:49 pm | Permalink
  7. Hamish wrote:

    Hello Shannon – it was really nice to see you and Ari at the no frills today – we would have chatted more but had to get home quick!

    Your commitment to Ari and Caitlyn is inspiring – in the face of an illness like yours it would be almost to easy to become selfish and bitter, but you remain positive even on your worst days . Ari is so lucky to have you as her dad!

    Chloe requests a playdate soon!

    Tuesday, June 1, 2010 at 5:54 pm | Permalink
  8. Robyn wrote:

    Best wishes Shannon. I have been following your blog for a few years now. I am only 21 and a nursing student but your philosophy and ability to parent are so incredibly inspiring to me and I only hope to be half the parent you are. Despite the fact that we’ve never met you and your family are more to me than just blog postings. Best of luck to you, Caitlin, and Ari, enjoy the time you have together.

    Tuesday, June 1, 2010 at 6:00 pm | Permalink
  9. Gillian wrote:

    We love you, Shannon. <3

    Tuesday, June 1, 2010 at 6:27 pm | Permalink
  10. Justine wrote:

    You inspire me to let go of all my self loathing so I can appreciate life’s small treasures. Despite your illness you appear to live such a full life and I admire that immensely. Thank you.

    Tuesday, June 1, 2010 at 7:50 pm | Permalink
  11. Indigo wrote:

    I’ve said this before, but truly, it can never be said enough that you are an wonderful inspiration to so many of us, as a father, partner and individual. The world needs more people like you.

    In regards to not keeping food down, that causes my concern, built up from many years of intensive medical research for loved ones, to surface. You seem to be very well-informed of your health issues, so I’m sure it’s nothing new when I say that I worry about accelerated atrophy that can be caused by malnutrition, dehydration, and the required bed rest. Have you spoken to anyone about a home nurse for the more severe episodes? I know that they can come by and hook you up with an I.V., for example, to keep your electrolytes and everything else in balance when it’s impossible to force anything down, if that’s a feasible option for you. Also, have you considered an anti-emetic, such as Ondanzatron/Zofran? It’s hellishly expensive, but your doctor can submit a request for a government grant that will usually cover it in circumstances like yours.

    Sorry for the ramble – just some (possibly useless) advice from someone who cares about someone who has considered you something of a mentor for many years. Many positive healing vibes your way.

    Wednesday, June 2, 2010 at 3:40 am | Permalink
  12. dresden wrote:

    Best wishes man. Hopefully you just have an undiagnosed case of the flu and you’ll snap out of it.

    Wednesday, June 2, 2010 at 4:25 am | Permalink
  13. Elizabeth wrote:

    I have a very nervous stomach and at times cannot hold anything down, lack of food making nausea worse as you know. If you can force yourself to never go without sustanence even when you know it will be a challenge to hold it down, it will at least stop the cycle.
    I know it’s “stinkin’ thinkin'” to consider that one of the best Fathers that I have ever known is doing poorly healthwise while so many piece-of-shit parents can spend years avoiding
    responsibility with drinking and drug abuse and not seem to have any real health problems at all.
    It truly does make me crazy at the injustice. I am so sorry! I’m glad you have Cailin and Nefarious, blessings both but I can imagine how horrible it must be to be far from 100%.
    Anyway, I’m with Gillian. XOXO

    Wednesday, June 2, 2010 at 4:56 am | Permalink
  14. Gustavo wrote:

    It’s strange, but even i not knowing you, never met you in person and the only direct contact i had with you was through a reply in one of the few comments i wrote here, I feel like we are old neighbors, friends. I reaaly like your visions of the world, the life and i miss your posts a lot.
    I really hope you recover fast.
    Take care.
    PS.: Sorry for my english, its not my natural language. You don’t need to accept this comment, its only to say for you that you have a friend in Brazil that you don’t know. :)

    Wednesday, June 2, 2010 at 3:46 pm | Permalink
  15. Dara wrote:

    I wish you all the best, Shannon. From finding BME while in school in the early 2000s, to now following your posts 10 years later, I will miss your posts but am glad to have been allowed to witness some of your life through your blog here. Thank you for sharing your life with me and everyone else!

    Wednesday, June 2, 2010 at 5:10 pm | Permalink
  16. tiff wrote:

    I’m similar to Dara. Back when BME was awesome, you inspired me on so many levels. I was devastated when the mutiny occurred and left the community in protest. I visit your blog periodically and love reading. My son was born a few years before Nefarious was and I love seeing how you’re raising her. You make me want to be more active with my son. I take the lazy route far too often.

    I hope you can find the answers and health that you need and deserve. Keep up the good work. Your community may be smaller than it was, but it’s still very strong and filled with great affection.

    Wednesday, June 2, 2010 at 6:29 pm | Permalink
  17. Ezra wrote:

    Hope you get to feeling ace again soon, Mang…
    I bet you will.

    Wednesday, June 2, 2010 at 7:12 pm | Permalink
  18. espviper wrote:

    Please hang in there. Your life has been an inspiration and will continue to be. If it wasn’t for you I can’t imagine how terrible my attitudes towards body mod and self-acceptance and ME would be.

    Thursday, June 3, 2010 at 10:46 pm | Permalink
  19. Barb wrote:

    Shannon,BME freed my soul. Thank you.

    Friday, June 4, 2010 at 12:16 pm | Permalink
  20. Prey2god wrote:

    i cant believe i my discovering of zentastic came at such a troubling time. I’ve been spending some time reading up from the first posts and its crazy to think how much the unforeseen effects us. Thanks

    Friday, June 4, 2010 at 12:50 pm | Permalink
  21. Matte wrote:

    I wish you the best Shannon. You have always been a kind, giving soul to all of us. Thank you for all the inspiration you have given me over the years and I hope there are many more years in the future. Though I have only met you once (at APP) I feel like we are friends.

    Friday, June 4, 2010 at 5:14 pm | Permalink
  22. michelle wrote:

    Chronic illness sucks.

    Live, live, LIVE each day – your kung fu is strong.

    ALL ONE. :) Stay strong.

    Friday, June 4, 2010 at 8:16 pm | Permalink
  23. Linda wrote:

    Hi Shannon, long time lurker and admirer. I am a massage therapist and interested in alternative medicine also. I work with several medical doctors, chiropractors…. Is massage contraindicated in MD? Is it too painful for you to bear? Massage can be a workout for your muscles and can be done in a way that may not cause you pain. Have you ever had a hair analysis? Been to a chiropractor? Had Acupuncture? Have you looked into alternative methods? Just would be interested to know if you have.You have too much in your heart to give up. Is your medicine wiping you out?? I am by no means a medical professional. I work with several people who have Parkinson’s and fibromyalgia, sarcoidosis, lupus. Very often they can get much relief from massage. The relief doesn’t last forever but they may get 2 – 3 days where they feel “normal”. There are many medical DRs nowadays who straddle both sides of the rail as far as traditional and alternative go. A person like you, with your spirit, with what you have inside you, with what you’ve done for a whole lot of people, shouldn’t give in. No need to answer, just wanted you to know many people are sending you their thoughts for healing. PS I am a painter too and enjoy your work very much.

    Friday, June 4, 2010 at 8:16 pm | Permalink
  24. sarah wrote:

    i hope everything turns out “ok”…though what the hell does ok mean in this case?
    and i pray for aris custody arrangment should something happen to you.

    Friday, June 4, 2010 at 8:41 pm | Permalink
  25. Tim wrote:

    What they all said!

    Seriously, I hope you find something to cure this, or at least alleviate the symptoms.

    Take it easy.
    T.

    Friday, June 4, 2010 at 9:44 pm | Permalink
  26. Stephanie wrote:

    Oh Shannon…

    What can I say that hasn’t already been said before? I’m thinking nothing really.
    Although, thank you for inspiring me to get off my ass and live life. After Jason’s death I was so torn apart with grief I forgot how to “live” for too damn long.
    Then I come here and read about this and how you manage to still live your life in spite of it all. Thank you for that, it just proves that in spite of how hurt you may be (physically/mentally or emotionally)it’s very important to live the life that you have for what it’s worth.

    You’ve touched so many people lives including my own and that’s something that we will always have. Thank you for that as well. Your lovely ladies are very lucky to have you in their lives.

    Keep on keeping Shannon, you can’t keep a good man down :)

    Saturday, June 5, 2010 at 10:20 am | Permalink
  27. Frannie wrote:

    Shannon, I have to say that you are one of the most positive and caring people out there. It is such a shame and a waste that your body is letting you down. I understand about how debilitating chronic pain is, my mums body is ruined, 2 false knees, crumbling vertebrae, dodgy hips abd various other problems have left her in constant pain and years of taking pain medication has left her immune to all but the strongest.

    It shows how strong you are inside that you are still managing to remain positive and live life to the full and provide all the love and support that you do to Ari and Caitlin through a constant wall of pain.

    Just echoing the sentiments of all your followers.

    I hope that science and medicine can provide you with some kind of breakthrough. The world needs more people like you!

    Sunday, June 6, 2010 at 3:03 pm | Permalink
  28. Emms wrote:

    I have just gotten to know your work (including B.M.E) over the last year or so, however, I know it’s only been for a short while but you’ve been such a big influence and an inspiration. Thank you. All the best. :-)

    Sunday, June 6, 2010 at 3:19 pm | Permalink
  29. I hope they find an answer or treatment for you soon, you have accomplished so much and I am sure you will to go on and complete many new great adventures in life. I have faith you’ll be able to travel and have a great time doing so. Hope this week is better than last for you.

    Tuesday, June 8, 2010 at 9:27 am | Permalink
  30. Ben wrote:

    Hope You Feel Grandest Soon Shannon, At Grimm Times Your Blog Has Had A Positive Effect On Me And Hope All These Messages Can Do The Same For You

    Much Love To You, Ari and Caitlyn <3

    Tuesday, June 8, 2010 at 1:36 pm | Permalink
  31. kay wrote:

    take care of yourself shannon. xx k

    Wednesday, June 9, 2010 at 9:29 am | Permalink
  32. me wrote:

    i magically found this blog.
    i check for updates often.
    you are fantastic.
    your daughter is beautiful.
    your lady too.
    your words and stories are enjoyable and your vigor is wonderful.
    please stay as strong as possible.
    for you…for your gorgeous family.
    live free shannon.
    do whatever you please.

    Wednesday, June 9, 2010 at 5:35 pm | Permalink
  33. Neek wrote:

    I send all my love dude. you have been a massive inspiration to me for so many years now. I find it awe inspiring that through all this you are still finding the strength to give Ari such a beautiful childhood. Iechyd Da Cariad

    Thursday, June 10, 2010 at 12:22 am | Permalink
  34. Mike wrote:

    Hey Shannon, check Craigslist for Rv’s. My wife and I got a great deal on buying an older model. We’ve been living out of it (we lost everything due to job losses). It might actually be cheaper than renting one for the summer.

    Thursday, June 10, 2010 at 3:57 am | Permalink
  35. starbadger wrote:

    Today I am 70
    I was suppose to die in 1994

    but i did not

    Thursday, June 10, 2010 at 6:14 am | Permalink
  36. hammerhead wrote:

    Nothing can be added to what’s been said I thnink.
    Maybe just the example of Stephen Hawking, just unreal for any neurologist, including me.
    The spirit is strong in you, and I hope to read your new bodymod stuff when your legal situation changes.

    All the best, Shannon.

    Friday, June 11, 2010 at 10:15 am | Permalink
  37. jamie wrote:

    Shannon, we have never talked but I was a regular on bme till rachel took over.
    I am currently finishing my last year before I become a PA. If I can help you out in any way… let me know.
    As far as ari goes (and I don’t mean to be blunt) but if something happens to you…. does that mean she goes with bitchface? You’ve done such a good job… I would hate to see it ruined.

    Friday, June 11, 2010 at 8:58 pm | Permalink
  38. JonnyButts wrote:

    What you’re Father said!! Stay strong brother!

    Saturday, June 12, 2010 at 4:38 pm | Permalink
  39. Ross wrote:

    I want this comment to come out as positive as I mean it to.

    Its crazy that someone like you has this happening to them.
    I’ve never met you but from what I gather you have put a lot into the world you are in and feel you have a well explored perspective on life.

    You have a sense of what is coming, and it must give a much grander perspective than many others will have. I always feel that when I get older my fear of dieing will cause me to pass even quicker.

    Best wishes, I hope as I gain age I become as wise, knowledgeable, and as cool of a dad as you.

    Saturday, June 19, 2010 at 9:16 am | Permalink
  40. Cut Throat wrote:

    I hope you’re well, Shannon. Between your latest posts, and your even more recent lack of posting has me a bit worried.

    Saturday, June 19, 2010 at 10:08 am | Permalink
  41. starbadger wrote:

    Happy Father’s Day
    Super Father you!

    Sunday, June 20, 2010 at 11:57 am | Permalink
  42. Dennis wrote:

    Sorry you are having health difficulties. I sure do miss the old days of BME when you were the guiding force. It’s not the same at all now without you. Please keep seeking out medical help as well as other types of treatment including psycotherapy. You can have a good life in front of you. I sense strongly that somehow you’ve given up on life to some degree. I don’t know why I feel this. I’ve never had visions or anything, but I feel I’ve known you for years; and you just don’t seem to be the same regardless of the pain/physical infirmity.

    Fight back man! I love you!

    Tuesday, June 22, 2010 at 8:36 pm | Permalink
Wow Shannon, that's really annoying! What is it, 1997 on Geocities? Retroweb is NOT cool!

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