Wednesday, September 18, 2013

How Then to Live?

I recently watched the premiere of the TV show, Ironside, in which the lead is clawing his way through the first months after becoming a paraplegic from a gun shot. In one pivotal scene he meets with his old partner, who is clearly emotionally ravaged by what happened. Their conversation distills down to the one who stays stuck in the emotional muck of what happened and the other who has no choice but to face and deal on a daily basis the brutal reality of living. He has to get up every day and face his changed body and shattered dreams. His partner has the luxury to stay stuck wherever he chooses. Disease, illness, and injury simply don't allow for this; every time one hurdle is crossed the next one is coming. And you need to be ready. No one but yourself can ever fully understand what it is like to be in a daily battle for survival. Every day, I ask myself and I pray to God, how shall I live today? I know the only way I will survive is if I stay strong and have other people in my life.
What can other people do to help? I am hoping that after reading last week's post, and if you are still reading today, then you are ready to join me in what is quite literally a fight for my life. And it isn't necessary to donate a kidney or give up a weekend or take out a second mortgage on your home. I desperately need connection and encouragement from others. Here are a few ideas that have popped into my head:

  • Electronic Cards. For a $12 yearly membership at, in about 10 minutes, you can calendar a years worth of cards that will pop up on my computer. A small investment of time and money to bring little pops of joy into my life. Or regular cards.
  • Magazine Subscriptions or Kindle/Amazon gift certificates. $5 goes a long way. I spend countless hours laying in bed twiddling my thumbs. I need creative ways to fill this time-help me think of ideas.
  • Stop in for a short visit (always call first) or send me an email with a few pictures and a description of a recent adventure you went on. I love to hear all your news and your lives. I love pictures of your kids and news about them. My own world is pretty closed and quiet and too often quite boring. I am not the best at returning email, but will try. But it is great to hear from folks. Please don't forget about me. I am still here, just a much slowed down quieter version of myself.
  • Play WordswithFriends with me. Not sure what that is? It is an App on smartphones, laptops, etc. that is a simplified version of Scrabble. Let me know and we can exchange all the info and get to playing. Lots of fun.
  • Send me links to interesting articles you've read. If you wish send me your comment(s) on the article---maybe we could have a discussion.
These are just a few ideas. And, as always, no one has to do anything. I am just asking that anyone who is in my circle and has a connection to me to seriously consider doing something concrete to better my life a little bit. I need all the help I can get right now. I have an 86-yr old woman in my life who for the past 8 years has called me every Thursday morning just to check on me, tell me a joke, and tell me she cares. These calls last for a couple of minutes. Kind of amazing to consider that kind of commitment and dedication. Thank you Alice! Many people do other selfless acts of love in my life. If you would like to get involved it doesn't have to be expensive in terms of money or time; all I want is the human connection.

What do I do to Live

  • Make a choice every day to move forward.
  • Take naps-waking up muzzy headed and warm.
  • Relish Popsicles, ginger ale, and ice-cold melon. Redefine 'treat.'
  • Accept sleeplessness and chronic pain as seamless parts of my life
  • Find beauty in the doldrums. Warm blankets fresh from the dryer, strong fingers washing my hair, hummingbirds dancing in the begonia outside my window
Somehow, like a well-crafted crazy quilt, I put all this madness together and it starts to be semi-functional art. I can be almost proud to be surviving despite the best efforts of secondary progressive MS to tear me to shreds. The path I am rolling down is difficult and I wouldn't have chosen it. But here I am now, 47 and slowly losing ground to this disease. It doesn't have my soul or my spirit and it can't keep me from living as much as I can for as long as I can.

Monday, September 9, 2013

Big Topic: Facing Reality

These past months, since about last November, are the toughest on record in my battle with multiple sclerosis. relentless, close quarter, bare knuckle fights that are ongoing. I am currently having an exacerbation, am on home administered steroids and have lost another chunk of function. Now it is time for me to say a few things and ask the people in my life to consider them and think about how they want to move forward.
A wise person had the insight that my reality may be entering a phase that is too real for folks to handle. I would like to remind folks of a few things, share a few strategies, and if I dare, say what works for me going forward in what are probably the last few years of my life.
Reminders: about my MS

  • I am in pain, serious nerve pain, all the time. 
  • I have accelerating chronic cognitive issues 
  • I am in bed at least 15 hours a day.
  • All 4 of my limbs are now fully involved to some degree.
  • I have chronic pervasive clinical depression.
  • I can eat only a handful of foods and have grinding nerve pain in my stomach.
  • I have countless other symptoms.
  • My health is only going to worsen in the coming months, and years. Whatever time I am blessed with.
Reminders: about my MS and others
  • You look so good-how sick can you be. I no longer have it in me to explain this illness over and over or my experience of it. If you don't understand MS cognition or another aspect do some research, or send John or I an email. He does great research and has a deep clinical understanding of my health. If I don't come across as sick as you expected, either read through my blog, or do some research focused on the invisibility of MS, or just be a part of my life. When I have the joy of company, I rest for as much as I can then pour myself into the visit. My type of cognition issues doesn't affect personality or intelligence. It does make me forget who you are while we are talking on the phone so I jot your name down at first or by the end struggle to place who you are. After your visit I may sleep for hours or be wiped out for days. Refer to the above list or ask me specifically about the state of the MS or my pain. I rarely bring it up in social settings. I would rather be as normal as possible when I see you. Don't confuse me being social with a statement of the status of my MS. And please don't pass your guesses and feelings around as facts or share confidential details with others. If you were here and I spent the afternoon vomiting, I don't to want to spend the next week hearing back from others all about it. 
  • It is more than OK, even encouraged, to make your own way in relating to my MeSs. Look, I am the only person who has no choice on the 'all in' starring role in this all to real reality series. No one else has to do anything else. I am so fortunate in many ways. I have a long-term abiding faith that sustains me. I am deeply grateful to all who do so much for me. Many folks fill myriad niches.
  • At the same time, as the one year mark nears, it is a good time for everyone to evaluate if and how much they are up for the 'real' journey. It is ok to decide you can't be involved or that you want more. If you want off the blog reader updates, send me an email or just delete it. If you ever have any questions, email is best. Phones are tough, but not impossible. If I call and ask you for a favor, No is a perfectly Ok response. I have a big list of helpers. And, if you need respite from my reality, please take it. I don't have the need to know the whys or have a dramatic conversation. I will miss you, but I will be OK.
Reminders: about my life with MS going forward
  • I am in this fight. I want to experience the best life I can with as much sass and verve as I can. But most of that pep is slipping away. Now I am finding that quiet and peace and rest are the reality that suits me best.
  • I have dreams. I have things and people and my God who make life livable. Life isn't just doom and gloom at our home. But it certainly takes the lions share of our resources, energy, spirit, and everything else to survive.
  • I need people to have any hope of surviving what is ahead. I also want to give folks permission to design what that is for them. In my life or not, a little or alot. Figure out what works for you. Keep in mind that I have lost the ability to remember appointments and return phone calls reliably. This is an area that I need help and grace with. Throw out the etiquette book and keep calling, then follow up with an email.
So to put it plainly, I am writing this today 1) to be as clear as I can about what is going on with my health currently and in the future 2) to ask all the people who are in my life to evaluate if they want to involved in this journey 3) to state what I need from this point forward.

It would be easy to respond to me with a 'love you always going to be there.' But it isn't easy to do. Everyone has there own struggles and lives to manage. And my MS is in the messy stage. Really take a deep think before you commit to more than you can honestly do. Only respond if you are moved to. I am not writing this seeking volunteers or money or a mansion. Simply to bring up the hard truth that my body is failing and everyone should be preparing for that in their own way and if they want to be involved or not.

I am too tired to write anymore. Feel free to email or comment. Big topic, hard to explain and harder to talk about.

Wednesday, September 4, 2013

Facing What has Passed

It was one of those quiet moments where you don't feel the sharpness of the pain until later. I have a dear friend in my life who volunteers at least five hours a week to help us clean and manage our house (Amazing!) She and I were going through an over stuffed bookcase and came to a shelf of gardening books. I realized that while our yard is lovely due to regular visits from yard care professionals and co-vegetable gardening with another family, my days as a gardener are behind me. It is probably at least two years since I had opened any of these books. It was time to find new homes for most of them. By the end of our sorting I plan to only keep three of them.
On a later shelf, I came to the last of my professional editing books. A few years back I parted with my science editing library. These remaining books were a set of style manuals and a few favorite books on the art of writing. Again I realized it was at least 3 years, if not more, since I had looked at them. It felt like they were from another life. Time for them to go.
I am trying to squarely face the losses in my life while also simplifying what is around me to make life as easy as possible to live. It was relatively easy to put the books in the 'go' pile. It is a much harder thing to accept that the roles of editor and gardener are no longer on my life resume.