Being funny...

I was at a MS support group the other day and joking in that graveyard way a lot of us with MS have about the changes in the disease, the weird things that go on, the humour in our everyday challenges. It seems to me that a lot of us with MS have that kind of humour - there isn't much that can be done for the disease, so we may as well laugh and get on with things. As we can, lurching merrily about and etc, dropping things, wobbling here and there...

But one lass took exception to our joking about.  She was seriously upset about MS and felt we weren't taking things with the right sense of gravitas. She was right.  We weren't. Right then.

MS is so often invisible because we don't get seen when we are down and out.  We go to ground, we hide at home, we don't answer the phone, we rarely speak.  We deal with our sorrows and losses privately, knowing that there is a limit on what we can expect friends to tolerate, that daily complaints just bring us down, that our private struggles don't make for good press.  The disease doesn't go away, it doesn't get better, we aren't "fighting" it like one does with cancer (because fight as we might, we can't beat it).  It becomes boring to share. Even a disease like MS that changes every day can become same old, same old.
This doesn't mean we don't spend several days of our lives destroyed by grief, or struggling to get anything done, or depressed to black.

When we get together, we share our challenges, but we also have a good laugh.  People who don't deal with this chimera of a disease don't understand what we go through, and it feels so good to laugh with those who can nod and add to the joking. It helps. Like this drawing by Bill Watterson, seeing others laugh can't help but make you smile.

So I say, let's laugh, giggle, snort, guffaw, and hoot this disease into the corner as often as we can.  It will creep out again, but let's enjoy our sorrow-free moments.  Let's wallow in them.

Grieving

Before I was diagnosed with MS, I was diagnosed with the depression associated with MS. Of course, they didn't know that that was the cause then - they thought it was garden variety depression and I was quite willing to accept that. Trapped in a marriage I was desperate to leave, numbed down to anger, frustration, sorrow, in pain and with weird body symptoms, I thought this was maybe the solution, and I went on and took the suggested antidepressants with hope.

They worked. They kept me from going mad, they gave me the strength to leave my marriage, to change my job, to continue confident although by then my brain was operating at 20-80 capacity, uncorrected.

MS gave more reasons for grief - losing my capacity to work, making poor judgements, financial losses, physical changes I was unable to ignore, and my change from healthy to patient. I handled it all with aplomb, rarely crying, rarely allowing myself to wallow completely until the emotions would be so strong they sent me into suicidal despair. Even then I shook myself off, wiped my slightly weepy eyes, and went on. Movement equaled coping, and as long as I didn't pause, I could think I was coping okay.

Lately, this hasn't been working for me. The numbness of my body, now total, is also matching the numbness in my heart, in my brain. I've developed such high walls around my garden of grieving that I've needed to throw all other emotions in there - joy, love, hate, adoration, belief, everything.

A couple of things have started knocking at the walls. First, my ex has decided to remarry someone who I know deep in my heart is bad for him. I am amazed that I care, and that I am so so angry at him for the way he treated me, still, and for the fact that he has found what he feels is love and I have been unable to. I don't want him back, no no no, but it is galling he has fallen in love with someone so different from myself. And that he grants her things that he denied me, without question.

Second, I lost some people very dear to me lately - a favourite aunt, a sweet uncle. Their deaths made me revisit the deaths of my parents, so long ago, and also ungrieved (see ex, above). They also made me revisit other relationships that haven't gone well, or that I have lost.

Also, a very clever woman asked me yesterday about my "well-guarded" status - and asked about grieving about the MS. Of course I started draining like a leaky faucet right there and then. Yes, I am totally guarded, that's my problem, and the thing about MS is that you have new reasons to grieve every day. Little losses, little gains that are illusory, little hopes that get crushed, and now little fears that grow up in their place. I've spent so much time pretending I am okay, with everything, that I almost believe it, but not really. I joke about losing my sensation, my continence, my balance, my ability to stand. But it isn't really funny and perhaps I just need to do some private grieving and let it go.

Maybe I'm like Yellowstone, that huge volcano in the middle of the US. If it were capped, it would build up pressure and explode, rupturing most of the US and destroying all about it. But it lets off steam, all the time, through Ol' Faithful and various other geysers and little leakages, so it will likely not explode. Maybe I should let go slowly, rather than slapping on a lid and a smile, joking my way as I fall apart.

Car Trip...

My darling aunt passed away last week. She lived in St. John, NB, a pesky part of the province that seems severely underserved by public transit access. The only real way to get there is by car. The only way for me to get there was to drive myself, 2500 km. roundtrip.
But my aunt was such an important part of my life, and her children and husband are so precious to me that I couldn't conceive of not attending her funeral. So I hopped into my long-suffering car with my long suffering body, and headed out, thankful for cruise control.

I also wanted to prove to myself that I could still do this sort of thing. With increasing disability on the horizon, I needed to feel that I had a starting point that would grant me some time.

So off I went. Other than an overwhelming feeling that the whole country could easily be hemmed in the middle, taking out some trees and stitching the quilt together (there are many many many trees in Quebec and northern NB, almost too many to understand), the trip there was tolerable, I stayed awake, and I was doing okay.

Day two of being there brought on the Mad Sow. I leaned on relatives to drive me about as the thought of negotiating St. John streets was scary. I couldn't understand the map I bought and spent several moments driving in circles trying to find my cousin's home. My feet started spasming, my legs started wobbling.
By the trip home, I was weaving attractively as I stopped in the rest stops, I'm sure making more than one motorist vow to stay out of my drunken way. I fell asleep a couple of times, but pulled over for coffee and rest. I arrived in Ottawa twitchy and spasmy, but I had made it.

Today, I'm recovering. Barely able to open my eyes....but I'm glad my MS hung out in the background long enough for me to honour my aunt, a women of true grace and grit under duress. May I be half the woman she was.
Much love for my aunt Dorothy Anne - wishing you rest.

Finding True North

I bought this book years ago, and have thrashed through it several times. I've written all over the pages, expostulating, cryptic notes with almost enough information to know what I meant. Right now, though, it seems singularly prescient. I recommend it highly. It seems to capture all the strengths based focus of Marcus Buckingham, Lerner's Dance of Anger and Dance of Intimacy, and Mind over Mood. It's also written in an engaging voice with a touch of humour.
I've found it intriguing and compelling, especially about the grieving process I am going through and will continue to go through with this disease. Martha Beck talks about the schism between our essential and social selves, and how our bodies somatize our emotional rejection of incorrect directions...
For the last three months of my work, I had a constant tear in the corner of my left eye. It got so bad I developed an infection from the constant dampness. When I left work, the tearing stopped. Was I grieving my anticipated departure? Or was my body grieving for where I'd got myself to, professionally? Or was it about something else entirely that I've somehow now dealt with, now that I have the solitude to dig through the long dark teatime of my soul?