Posted by: sistermom1 | October 28, 2018

Touching base after some time….

It has been awhile since I last posted. All is well, and I am navigating new realities every day.  I am not yet walking, and still using a wheelchair.  I am healing from a broken leg — which I injured in a fall earlier this year. I read this article in the New York Times last month. Please enjoy.  Although the writer’s experience is very different than mine, I needed to share.

Losing Touch, Finding Intimacy

“One of my oldest friends is here to visit. For as long as we’ve known each other, we’ve been in sync, weaving in and out of each other’s lives and reaching milestones together. We married our partners around the same time, went through law school and medical school at the same time, got pregnant with our sons in unison and lived as neighbors for years. Although we have visited each other frequently, time has slowly gotten away from us. I haven’t seen her in more than a year.

She gingerly lies down on the sofa while I sit nearby. She isn’t looking good. Thinner than I’ve ever seen her, weak and in pain. “How are you?” I ask. Well, I have cancer,” she says plainly. She changes the subject, not feeling the need to linger on her recent prognosis or to specify that it is terminal. All I want to do is hold her hand, rub her shoulders and tell her how much she means to me with a firm, loving touch. I stay distant from her, unable to move. I imagine stroking her hair or giving her a pillow to feel more comfortable, but I cannot do anything. Our conversation ebbs, flows, then trickles into silence; there is not much more to say.

She rests her hands on her stomach, where she holds the most pain. Five years ago, I would have bridged this silence with a gentle hug or touch. But I am stuck, immobile, unable to express my thoughts and feelings. I don’t allow myself to cry as we say our goodbyes.

 

When I lost the use of my hands, I lost my love language. I have multiple sclerosis, which has resulted in the loss of the use of my limbs. My disease progresses so slowly that I am caught by surprise when I can no longer do something. Little did I know I have been losing my range of motion by a fraction of a centimeter every day. Nerve by nerve, I lost the use of my legs, arms, wrists, hands, pointer finger, thumb.

I can’t tell you when exactly I became a quadriplegic, only that I know I am now a part of the club. My paralysis limits me down to my fingertips. I can’t operate my wheelchair, can’t hold a coffee cup, let alone someone’s hand — I can’t actively touch in any way. Like a fortress, my wheelchair is both impossible to leave and difficult to enter. If others want to reach out and touch me, it can be intimidating to make the first move. It feels like there is a thick pane of glass separating me from the outside world, and because of my physical disability, I begin to believe that I am powerless to break through.

Over the years, I have tried to make a home out of my fortress, my glass bubble, uncomfortably settling into my grief. There are times when I feel connected to others, but in most situations, I become passive. I work hard to forget the joy of touching. I am a positive person, I tell myself, I can deal with this. I set up camp at the base of my Mount Everest and try not to glance up at what I am missing.

But I feel the loss of touch as if it were a limb that has been severed from my body, an invisible, open wound I painstakingly cover up each day. I am hyper-aware of the moments when words are not enough. When touching someone’s hand is the only way I can truly communicate my feelings. When I can’t greet someone familiar by warmly placing my hand on their shoulder. Or when I know someone is sad, and it’s not appropriate to talk about what’s wrong; I can’t reassure them affectionately. It is like not being able to breathe. This loss, in combination with the guilt I feel when I grieve it, is overwhelming. I resign myself to the idea that I will never experience consensual, nourishing, intimate exchanges of touch in everyday life.  It is in this state of numbed resignation that an unexpected crack forms in the thick glass that has been separating me from “normal” people: A ray of light that reveals a world of intimacy I have been overlooking.

I am visiting with another friend at a coffee shop. My voice is weak and hard to hear in crowded spaces, so I use a voice amplifier. The amplifier has a microphone and a headset that make me look like an aerobics instructor who happens to be teaching in a wheelchair. I’ve got my headset in place, but when my friend leans in to hear me, it’s no use. My voice is too faint. I motion with my head toward the dial on the device, which can be turned up to make my voice louder. He tentatively discovers the dial, locking eyes with me to check the loudness of my voice. As I keep talking, he turns the dial up, then up and up some more until, yes, there, he can hear me. We nod and smile in unison, return to our conversation.

As he settles back into his chair, I feel lightheaded. By increasing the volume of my voice, he had turned up the very essence of “me.” The fact that he cared so much to hear me. That he took the time to learn how to connect with me.

I had rediscovered intimacy, without touch.

My mind continued to reel long after we said our goodbyes. Maybe I can experience intimacy, I thought. It’s just that the language of it all has just changed. I had to redefine intimacy for myself. What is it, without touch? The freedom to express myself. The joy of being recognized, seen, accepted, equal. Letting my guard down, no longer burdened by society’s version of me, by my version of me. The feeling when the stigmas of disability and illness are lifted. I eyed my version of Mount Everest, thinking that maybe there was a way for me to fully rejoin the living.

After that day in the coffee shop, intimate moments emerged from the fabric of my everyday life. I began to notice how friends, loved ones and total strangers could make me feel visible and whole in completely mundane ways. Appreciating them took my breath away: that someone driving my wheelchair is making love to me, that someone kneeling to my eye level is giving me a gentle caress, that someone feeding me is a joint experience of pleasure and tenderness.

Within the mundane there are beautiful surprises, too. On a busy day, before work, my husband pauses his morning routine to make me a poached egg, his specialty. Something he wants to make for me — I didn’t ask. A friend tries to feed me a cookie. He does it “wrong” at first, but the process of figuring out the best way is like an intricate dance. Over the holidays, a family member puts on Handel’s “Messiah,” music that I love and everyone else in the family finds annoying. They usually refuse to put it on, but this morning they play it just for me, blasting it so that I can hear the music through my bedroom wall.

I savored these moments, and as I did I was propelled and empowered by them. I realized I could play an active role — I could give as well as receive. So I took my intimacy into my own hands, even though I am still grieving what I cannot do. I leave base camp behind and begin my slow, labored ascent; the fluid, open concept of intimacy spurs me onward.

I have always loved food. I muster the courage to ask someone to join me for a luxurious, two-hour pastry-eating session. We take the time to savor every crumb of a single pastry, eating at the same pace together, and I feel honored, loved.

I start seeing myself in others: I am a part of a tribe. Wheelchair users, people with multiple sclerosis, the elderly with canes and walkers, people struggling with aphasia or spinal cord injury. The list goes on and on. We are everywhere. I lock eyes with a 90-year-old man in a crowded elevator. He tips his hat to me with a warm smile. I see a woman with a mobility aide in the street and we grin at each other, comrades. Neighbors. Strangers. Visible, invisible.

I poke fun at my own disability, creating humor where there was once shame. When I’m drinking water, I have no way to stop, so when someone cracks a joke I laugh and spit water down my front. It’s humiliating, but hysterically funny at the same time. I have a damp front more often than not.

I now know intimacy can be everywhere. Moments I’ve noticed, received, created. You and I are sharing an intimate moment right now — because if you’ve gotten this far without turning away, you are a part of that exclusive tribe of people who truly see me.

But eventually, my quest for intimacy brings me back to the beginning. To touch.

My good friend is back to visit. We are trying to see each other more often — with less time left, it’s only natural. She lies on the sofa, and I verbalize all that I kept inside last time — how badly I want to stroke her hair, squeeze her hand, sit next to her. She smiles appreciatively, but moves the conversation along, not one to linger in the spotlight. She directs the conversation back to me.

We talk a bit more, and emboldened by my confession, I ask her if she would take my hand, if it isn’t too painful to move. Slowly, she sits up, and my caregiver rolls my chair as close to her as possible. She extends her hand, resting it in mine. We look at each other and breathe.


Elizabeth Jameson (@jamesonfineart) is a fine artist, writer and former civil rights lawyer. Catherine Monahon (@cxmdesigns) is a mixed-media artist and writer. She collaborates with Ms. Jameson on writing projects.

Disability is a series of essays, art and opinion by and about people living with disabilities. The entire series can be found here. To reach the editors or submit an essay for consideration, write opinionator@nytimes.com and include “Disability” in the subject field.

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Posted by: sistermom1 | August 9, 2018

Summer is Movie Time!

It has been a lovely summer — our oldest graduated from undergrad and started his first job in his field of interest with a great starting salary. Our youngest has had a fun summer, and is getting ready to move into her first apartment.  She begins her sophomore year with a research position at her school in the Psych Department, which is her major! My husband just retired — he is interviewing for a job that will use his impressive program management skills without requiring travel.

And me? I have spent the last few months in physical therapy working on building my leg strength. I have become even more determined to walk again!  I have also been participating in a year-long class that is focusing on how to manifest in my own life.  It has been fascinating and powerful. (Thank you Dr. Shefali Tsabary!)

The heat of the summer is usually very debilitating for me.  MS has contributed to my being very heat sensitive, and this summer’s heat wave has been incredibly challenging to manage successfully. Those cold vests help a lot, but frankly I have had to just remain indoors this summer. Saw Hamilton, Beautiful, and several plays at The Arena Stage.  Movies anyone????

Posted by: sistermom1 | June 17, 2018

It Has Been Awhile….

Hey!

I have not posted in my blog for quite awhile — over 2 years! I am not sure what has kept me from posting, other than not wanting to post anything — (not needing to share? Unusual but true….)

A quick update: my diagnosis has not changed – According to the docs, I do still have secondary progressive MS.  I am still wheelchair-bound, although I continue to exercise, and work to walk. I have celebrated my 60th birthday. It was a great evening, with 3 friends from high school attending.  Our son graduated from college (YAY!), and our daughter graduated from high school (YAY!). Both are looking for employment (one full-time and one summer — HELP!).  Both my husband and I are dealing with aging parents and the related options/decisions.  Also, we will celebrate our 24th wedding anniversary at the end of the year. (I can’s believe it has been that long!)  In October, I fell and fractured my  leg quite badly.  It took me until April to heal — after waiting to see if it would heal on its own, I had to have surgery, and the surgeon finally approved weight-bearing last month! Shortly after that, I needed my internal pain pump replaced (it was 8 years old!) and I went in the hospital again for that procedure….

Yes, it has been a busy and hectic year.  It is half over, and it is wonderful to be back blogging again.   I am ready to share more about this ongoing detour/journey – yes, this IS my journey – unplanned, challenging, revealing, often frustrating, but 100% mine!

Posted by: sistermom1 | April 24, 2016

Water Therapy – Love it!

It’s been months since my last post. I have been overwhelmed by my most recent health challenges, and now I find myself in new territory. I’ve got a new diagnosis — secondary progressive multiple sclerosis. I have been off meds for several months – no meds have been proven to help with this type of MS. What to do now? Not sure, but this week I experienced water therapy for the first time since 2007 when I had my hip replaced. I have not been able to walk unassisted since that time — 9 years. The operation caused an exacerbation that took me down a dramatic path from which I am still recovering. Multiple Sclerosis has been a challenging pathway for me and my family.

It took me some time to find a pool with a temperature that would not be too warm for me. (Heat is a big challenge with MS) I finally found one after calling 4 places. The water is not too hot, and not too cold — (just right as Goldilocks would say!) and it is a large enough pool for me to really be able to move around. It is amazing — to be able to stand and float on my back with my legs extended is a real gift. The therapists have been wonderful, as has the staff, which makes me both happy and sad. Can you be both simultaneously?

I love water therapy so very much — it has got me moving in very different ways, ways that I can’t do on my own. It has got me thinking that I can get ready to do more things. How? I’m not sure, but I find myself more determined than ever to move forward towards a different life.

Posted by: sistermom1 | November 16, 2015

A Pre-Holiday Apology

Difficult to believe that the holidays are upon us. I am definitely looking forward to getting together with friends and family over the next few weeks — from now to the end of the year. it has been a great year — very significant and quite enjoyable.

This year my husband and I went to FNCC (a Buddhist retreat in Florida), we celebrated my 58th birthday (and my husband’s 59th!). This year I splurged on season tickets to Arena Stage, spent more time with my (86-year old) mother, participated in a monthly Movie Club, helped coordinate a local-area family reunion, learned much more about expanding my life through prayer (www.sgi-usa.org), and started seeing a new functional medicine doctor….among many other things.
Also, our children had great accomplishments this year, including our daughter’s first performance in a school musical, having an 11-1 tennis season, and being invited to join the National Honor Society. Our son completed a great freshman year in college and launched a successful sophomore year as a College Park Scholar. As for my husband, he remains gainfully and happily employed, and his loving smile greets me every morning, as he takes care of our family.

But enough about this – here is my apology:

I apologize in advance to everyone who will be bringing food to our celebrations this holiday season. My journey to health this year has included a strict shift to a paleo diet. In a nutshell, this means that I must avoid consuming wheat, corn, wheat flour, sugar, most fruit, and dairy. This is not a choice for me to be “in”, or to get on the hot new trend bandwagon. This is a choice for me to try to manage MS in my life. When I do not eat the wonderful food that you bring, please do not take it personally, feel badly, or encourage me to eat.

This decision has truly been difficult for me to implement — I LOVE mac and cheese, pasta, cake, cookies and ice cream. (I’ll still have a VERY little taste of these things over the holidays – only when I make that choice.)  I have been working on this nutrition plan for most of this year, and I already can feel the difference. My doctor said that it will take a while for the healing to really show itself, but already many of you have told me how clear my skin is, how I have lost weight, and how my feet are less swollen. I have more energy every day, and it feels great!  Thank you all so much for your support. Please keep it up over the holidays. PLEASE go ahead and enjoy the great food — I will be enjoying my meals, knowing that good health is coming my way with every bite that I take!!!!!!

Happy Holidays!

Posted by: sistermom1 | November 15, 2015

The Power of a Text

I had an experience today that I am still processing.

As you may recall, I am a married mother of two. Our son is a college sophomore, who is having a very positive experience. I am truly grateful for that, especially at this challenging time of our lives as Black Americans in this country.

I usually text my son when my worry for him outweighs my trust for his safety (and trust in his developing common sense!)
My text messages to him are often filled with directives – “Don’t forget this”, “Remember to do that”, “Call home” type of messages. He has quick one-word responses, which irritate me, but I grudgingly acknowledge.

This week, I made a conscious decision to send him a positive text – one that did not tell/advise him to do anything. I texted him “Hey Robby, Enjoy this beautiful day today. Love you, Mom”
He did not reply immediately.

In fact, 2 days passed before he texted me back.

I resisted my usual response and chose not to think about it, or worry that something was wrong or had happened (despite the overwhelming newscasts these days involving racism at many colleges, Black Lives Matter, and such — this was before the events in Paris)

When I got his text I was inspired and encouraged. It read “Mom, got an A on my Accounting exam. I also got accepted into the Leadershape program training program”
What an unexpected, fabulous message — I happily shared the news (my husband, daughter and mother — not posting on Facebook – until now!) It was comforting – he seemed happy about his positive news – how amazing!

Was this simply a matter of timing? I guess I will never know, but it absolutely has changed the way I plan to communicate with our children. It was a great experiment. The decision to send him a positive text – and leave it alone – ended up leaving me (and him?) positive and happy – rather than hanging on waiting for a response to a to-do list. I think I’ll try it again next time.

Posted by: sistermom1 | August 16, 2015

Illuminating the world from a wheelchair?

This week I have been pushing myself not to be overcome by my physical challenges. I am still in a wheelchair, and this past week has been extremely difficult. It is very hot here (it is August in DC after all!) and MS and heat do not play well together. My legs are in a lot of pain, I continue on this strict diet plan, and for the past month have been coordinating weekly teleconferences planning a family reunion (no stress THERE!:-) I did eat sugar yesterday for the first time in 3 months — a slice of pound cake and a scoop of banana pudding, and that has had an impact, but everything went well and it was a great success!

Experiencing the event from my chair – especially seeing folks that knew me when, but who have not seen me in the past few years – made me pause. In the past, I was the one who coordinated many things, the one who walked around helping, the one who was called on to handle confusion, come early, stay late — you know, THAT relative. Don’t get me wrong, there are many good cooks and organizers in my family. This time I had to rely on them – and they completely handled it. We had a great time yesterday – lots of smiling faces, great food, old pictures and wonderful memories. Some drama too, but it was a real success thanks to so many people.

Still it made me wonder about how to value the contribution that I can make to the success of any team I am on. I have to change the way I view things like this. I have realized that I can help make things happen from a chair, I just need to open up my thinking, and be flexible about how I do it. So many of the things I have been reading point me towards a new way to accept my current reality — not only accept, but push through it and enjoy my life — no matter where I’m sitting.

Posted by: sistermom1 | July 28, 2015

Listening to That Inner Voice (Not the Good One!)

I recently had a strong realization — I have been listening to the wrong inner voice.

For the past 2 months I have been adapting my diet to being more supportive of my healing.  This new plan has been very challenging.  There are a lot of No’s: No sugar, no gluten, no eggs, no beans, not much fruit, no chocolate.  Lots of vegetables and lean meats…. Despite these limits, I did eat a fabulous piece of chocolate cake last week — I really wanted it, and was determined to eat it, no matter what.  Unfortunately, I did have a major reaction afterwards — my muscles tightened, my head hurt and my legs completely froze – much more than usual.  This completely confirmed what the staff at my functional medicine doctor told me 2 months ago — “Once you start you cannot cheat – not even a little…”

I  spoke with my therapist about how difficult it is for me to focus so strongly on myself and my diet in my attempt to improve my MS.  I shared that I often feel that doing that detracts from my focus on my family and that I should keep quiet about my own needs — that I should not have these needs in the first place – that they take me away from my husband and family — and what if after all of these changes they don’t even work?  I remembered that over the past 10 years, this nutritional approach to dealing with MS has come up at least 4 other times, but I discounted it in the past, feeling that it would be too hard, and what if it didn’t work?

She calmly told me that if my children needed me to do something this challenging, I would do it with no hesitation.  She asked me why would it be ok for me to do it for them but not for myself?  She talked about how the mind works — that when you make a strong determination to accomplish a goal, it often activates an internal  voice that will try to keep you safe by convincing you that you can’t do it – that it will be too hard – to take it easy and remain the same.

I was reminded of a book that I have read before — The Untethered Soul : The Journey Beyond Yourself by Michael Singer.  In it, he writes that “There is nothing more important than realizing that you are not the voice of the mind – you are the one who hears it.”  He refers to that voice as a “roommate in your head” that narrates everything that happens to you, and among other things, argues against any thought that moves you towards changing the status quo.

My session helped me see more clearly how that voice has been operating in my life – especially lately as I work harder to solve this MS challenge. I have been paying too much attention to this voice lately, and that’s not a good thing. It’s creating (exacerbating?) a real impasse in my thinking, which is leading to a greater impasse in my actions, which is making improvement of my health very difficult. Paying attention to this voice is problematic, and I really have to change. How? Well, going back to Michael Singer, “The natural ups and downs of life can either generate personal growth or create personal fears. Which of these dominates is completely dependent upon how we view change. Change can be viewed as either exciting or frightening, but regardless of how we view it, we must all face the fact that change is the very nature of life.” I realize that have been afraid to change, afraid to do things dramatically differently on this search for improvement in my health. But no more following that voice! I am determined to pay attention instead to the quieter, more gentle voice that nudges me forward on this detour in a more positive, hopeful direction. See you along this pathway!

Posted by: sistermom1 | July 5, 2015

Our problems have a purpose

I have been doing more thinking and more reading about many things — the nature of life – and why we have the experiences we do have. Why do I have a loving marriage while many of my friends do not? Why do we have two children who are both safe and doing well in this environment where so many African American children are not? Why am I a member of SGI-USA while so many other people practice different religions? Why do I have MS?

According to my Buddhist practice, in the long-distant past, we each agreed to tackle the particular set of circumstances we have encountered in this lifetime in order to demonstrate the power of chanting Nam-Myoho-Renge-Kyo. I often joke that I must have been either sleeping or partying when the challenges were distributed and I was left to select from a limited list of options. My mentor, Daisaku Ikeda, often encourages us about handling difficulties. In one writing he shares, “Reality is harsh. It can be cruel and ugly. Yet no matter how much we grieve over our environment and circumstances nothing will change. What is important is not to be defeated, to forge ahead bravely. If we do this, a path will open before us.”

In a past blog entry, I shared my father’s advice about difficulties – “Defeat only occurs when you accept it as a reality and stop trying.” I am very fortunate to have both him and Daisaku Ikeda in my life to inspire me when things get tough. When I am in a good space, my experience of MS has kept me focused on moving forward, and working to encourage others. Lately, the input from my new functional medicine doctor continues to be positive, and my nutrition journey continues (3 months and counting!).

Recently I have had a major realization about my challenges/problems. Like a bolt of lightening, it occurred to me that my problems are the door through which I must walk to have the experiences/lessons that I need to learn/have in this life. My challenges DO have a purpose, and I am determined to face everything with hope-filled courage, and to remember that challenging MS (one of my problems in this lifetime!) is one way that I can encourage and inspire myself and others too.

Posted by: sistermom1 | June 29, 2015

The Book of Mormon

Last night, my husband, daughter and I went to the Kennedy Center for a show.  We all really enjoyed it – laughed a lot and enjoyed the amazingly  talented, diverse cast.  What made it fun for me (besides the hilarious production!) is how the Kennedy Center handled handicapped patrons.  The seating was incredible — orchestra seats in the middle of the row of very comfortable chairs that could easily be moved to accommodate my wheelchair.  We also saw “Wicked” in this theatre last year, and it was very comfortable then too.

Another stand-out was the attention of the usher in our section.  During intermission she approached us to see if we needed a bathroom.  I did, and it was conveniently located — a private, easily accessible family restroom that was separate from the larger public bathroom.  (A woman who was not obviously physically handicapped was using the bathroom, and we had to wait for her to leave — she apologized profusely when she exited….My daughter swallowed her response, but mentioned it later…)  The usher also was prepared to help guide us out at the end of the performance, which we did not need, but was much appreciated.

It was a wonderful experience.  It was great having the caring attention of an experienced usher.  We thoroughly enjoyed the show — and I felt very welcome and comfortable, which is unusual for me. Thanks to the Kennedy Center for their thoughtfulness and for being such a welcoming place.  My experience as a differently-abled patron was one of the best I have had in 10 years of being in a wheelchair.  Riding through town with my family reminded me of what I used to do BW (Before Wheelchair), and was very enjoyable.  After having such a great experience, I started researching ways to get back in town to see the monuments and the museums. It has been awhile, and I have realized how limited my activities have become.

Keep you posted!!!!

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