A Guest Post …

Happy Thanksgiving to my Canadian readers – and tonight I need to correct that opening line to say “our readers”; a dear friend graciously agreed to write a guest post on a topic of her choosing, one which I’ll share with you now.

I’ll tell you that I gave Deborah a bit of a hard time about how generously kind her words are at the end of the post, a compromise was reached when she agreed to write a second guest post very soon that doesn’t mention me at all <and I’ll hold you to that promise Deborah!> <grin>

"They" say…adversity builds character, and what I've also discovered is you can meet the most amazing people while experiencing adversity, and they become contributors to your character.

I met Sandy as a result of her blog …my husband had just been diagnosed with Erdheim-Chester, after a year and a half of cycling through 27 specialists in 7 hospitals between Hamilton and Toronto, to finally get what they referred to as a '98% clinched diagnosis". As I read what I could find, I quickly realized this did not fall into the category of "if you had to pick a disease, choose this one".

While researching online, trying to find a glimmer of encouragement, I came across Sandy's blog. I felt this honesty and approachability in her words. I sent her an e'mail, thinking she was in the States somewhere and at best we'd have an e'mail chat, and maybe I'd learn a little bit about this disease and any support organizations out there. I couldn't believe it when I received an e'mail back within a few hours, and to learn that we both lived in the same city. Actually, only 15 minutes apart. If memory serves me, I think we met the next day at a coffee shop and I felt this instant connection which was sparked from a mutual experience of a rare disease that at the time only 400 people in the world had been diagnosed with.

I have to say I felt a bit awkward - I wasn't the one with the disease, I was the 'caregiver/advocate/wife' and full of questions - I knew enough about the disease to be fearful of it, and I didn't want to say or ask anything that could be perceived as insensitive. The prognosis for this disease is obviously not good, and my husband was still in a place of hoping for the 2% that they were wrong, and it would pass, and he would get better. He played football when he was younger and he had that mentality of staying in the game to the last few seconds, no matter what the score was. Hail Mary pass - win the game. He was an optimist off the chart - my mother called him a 'dreamer'. I on the other hand got to be the realist in this situation - we have two kids (who were 11 and 16 when he first started showing symptoms), over the year and a half of our quest for a diagnosis he went from requiring a cane to walk, to needing a walker, to then being fitted for a wheelchair. He was also going to 'adult day care' as I worked all day, the kids were at school, and he was requiring more help with things. I could see where things were headed, and the specialists who knew something was wrong, were also realists, as was the team from the CCAC.

Sandy and I talked about the disease, and she gave me all the resources she was aware of. I asked her questions about her experience, symptoms,thoughts/feelings/beliefs. Sandy's EC is very different from my husband's - it's a puzzling disease that way in how it manifests so differently. For my husband, the main area of impact is his brain stem. The initial signs were speech and balance. It's been 5 years since he had his first 'acute episode' was rushed to hospital, the thinking being he had a stroke, to be told he had lesions covering his brain stem, and had an 'unusual brain disorder'. Two and a half years ago he was at a level of needed care that required the skills and support of a Nursing Home, where he has a team of people who fully help him with his 'Daily Activities of Living' - i.e. getting up, dressed, bathed, fed.

As I have journeyed through this as a caregiver/spouse, Sandy has journeyed through it herself. Yet she always asks how I'm doing, and how my husband is doing. For all that she goes through, there has constantly been that caring and 'how can I help' support. We are able to have conversations that I wouldn't be able to have with anyone else - we both get it...from different perspectives, and when we have those deep conversations where thoughts and feelings are transparent, I no longer feel awkward. I feel blessed to have the opportunity to connect at that raw, no bs, this is what life is about level.

What a gift my friendship with Sandy has been. Through our unique paths of adversity, she has significantly contributed to my character.