Today started out as another challenging day.  Both of my lower legs experienced pins and needles – very difficult to manage as I cannot stand or move my legs independently. B.– the Health Aide that gets me started every morning — began massaging my legs, and they did feel better, but I could not do that all day myself. In addition to this challenge with my legs, my right shoulder pains and pops when I move it.  Also, my vision is a bit blurry this morning, which happens from time to time.

It is not often that I experience depression – and certainly not the “Why me?” reaction that many people have shared that they often have when facing the challenges of MS. Chronic illness can feel incredibly heavy – it can be a lot to deal with from day-to-day.  I find that the curse of limited movement in a fast-moving world is often too much to bear.

Luckily at these moments of difficulty there are two places that have been encouraging and inspiring for me.  One is the haven of my Buddhist practice. Chanting Nam-myoho-renge-kyo  has always provided a wonderful, nurturing place for me to build my courage and confidence allowing me to move forward. (www.sgi-usa.org) The other place reminds me of the importance of taking the time to live consciously – taking one step at a time, enjoying each one. with no judgment regardless of what is going on that day. (www.drshefali.com).

Taking the time to breathe deeply and accept myself wherever I am – even amid/despite the challenges of the day.  This totally supports me moving forward one step (or push in my wheelchair Denise!) at a time!

 

Now that our children are 20 and 23 years old, I am learning that as a Conscious Parent (CP), my role as Mom has evolved and I find myself playing a very different role than I used to — one of co-traveler instead of all-knowing leader. Truth be told, this has always been the role that my spouse and I should have played, even when our children were younger. But I come to this understanding late — not never!  I mean, I can’t begin to know the nooks and crannies of the world in which our children must operate — it is so different than when I was in my 20’s — so many things about daily life have changed. My suggestions often fall on deaf ears because they have so little to do with how their world (and it is their world!) actually works.

Now I can hear many of you react: “But so many things from that time are still true! The virtues that our parents taught us are still very applicable to today!” Yes, very true, but the way that our children embrace them has nothing to do with us directly.  It is completely up to them, no matter what we say or think.  “But as Black and Brown youths in today’s combustive, caustic and (hopefully!) changing world, they have a specially challenging way to navigate! They still need me to protect them!”  I say in response, “No they do not.”

“…It’s a tremendous privilege to raise children, though for a quite different reason than most of us who are parents imagine.   While we think it’s our responsibility to mold and shape our children’s future, the essential premise of Dr. Shefali Tsabary’s A Call to Conscious Parenting (www drshefali.com) is that our children are born to us to create deep internal transformation within us.”  As we change and grow, we overcome many of the messages we have internalized about ourselves and as a result, do not pass on generational pain to our own children. In my experience over the course of three years of voracious study with Dr. Tsabary, this is a huge issue that makes a big difference in how strongly I am able to connect with my children.

I wanted to share a little about what I have learned about Conscious Parenting so far. Please check it out – our children (and we!) deserve it! I have already seen a dramatic change in my spirit, my relationship with my spouse, a deeper understanding of my own parents’ journey, and a serious improvement of my relationship with both of our children!  I will write more again as this journey continues!

Woke up this morning for the first time in years feeling completely overwhelmed and very teary-eyed. This MS health journey has provided 12 years of unexpected challenges and learning – I will call them “opportunities”.  The latest addition of my mother-in-law (who struggles with dementia) to our home on a live-in basis is giving new meaning to our official inclusion in the sandwich generation.

I fought back tears all morning as my wonderful Health Aide (who I am blessed to have!) gave me a sponge bath and dressed me.   I cried as I am currently unable to move my legs on my own, and my shoulder creaks and pops as I move, and my back hurts terribly.  On a lighter note, I am also missing the daily morning kiss from my husband, since he does not have to help me dress these days

As I became overwhelmed by the heaviness of this illness and the way it manifests in me, my deep sadness about it, and my general  aches and pains, I arrived at the “Why me?” place. (WTF! I never get to the “Why me?” place! I have taken great pride in not going to that place! Never ever!)

In the midst of my funk, my 20 year-old daughter walked in the room on her way to Pilates class. She was energetic, positive and light — completely re-charging my depleted spirit. It only took a few minutes connecting with her to ease my negative mood.  What is it about our children (even 20 year-olds!) that can lighten us so dramatically, even in the midst of an unusual depression? Don’t get me wrong, I am still feeling a bit adrift — more so than usual.  I do love how I now know to  breathe deeply and to meditate to feel better. (Have to credit Shefali Tsabary!)

Thank you Lindsey-girl for simply being yourself and dramatically shifting my overwhelm. This Thanksgiving finds our family in pretty good space, which leaves me deeply encouraged. I am focusing on getting better care, and taking better care of myself,  strengthening the connection between me and my spouse, my son, and my other siblings on both sides.  I am determined to manage this MS more pro – actively, and to bring together all of the things I have been learning about myself and how I handle challenges, and the ways to move forward positively……

Time to start cooking the refrigerator pie and the cranberry sauce!

Part Two is coming shortly…

As MS has limited my activities, I have started taking advantage of the wide range of classes available on the internet.  Some classes have been a colossal waste of time and money.  Others – a select few – have been life-changing.  A big example — over the past four years,  I have been introduced to an amazing woman who has completely changed my life without my ever physically meeting her — Dr. Shefali Tsabary (www.drshefali.com ).  She is a psychologist who has written several books — The Conscious Parent, Out of Control, and The Awakened Family – all about how the challenges of parenting are a powerful entrance into establishing a more conscious life.

After reading Dr. Tsabary’s books, and examining my life as a parent (and as a child of two older parents!) I have participated in several online classes led by her — two year-long classes and four other classes ranging from several days to several weeks long.

Sharing a few of the things I am learning so far in hopes that they help you:

1. Reality is neutral – it’s our interpretation of reality that determines our experience. Accepting the as-is must be done before working to change anything.
2. Fear drives much of what we choose to do, and makes it very difficult to move forward.
3. Projection onto our children is a habit that many parents take part in and it prevents accepting our children as they truly are.
4. The inner child exists for all of us and we must develop a positive relationship with her/him.
5. Awakening is an ongoing process, and I am continuing to awaken!

As a practicing Buddhist (www.sgi-usa.org), many of these lessons above were not completely new to me, but it was awesome to see that Dr. Shefali embraced much of what I already knew to be true. She also showed me how to apply it in my daily life.

There are many times that I find myself asking “WWSS (What would Shefali Say) in this situation?” Between the recorded classes, the ongoing membership group (Hey Luminous ladies!),  our FB groups, and my own developing wisdom, I can respond to my husband and children in positive, value-creating ways!!! As I grow in my understanding of being a Conscious Parent (CP). (In my case, with MS), I will work to be able to ask myself WSLD? (What Should Linda Do?) in any situation and know the CP answer.  MANY THANKS SHEFALI!

This MS journey has exposed me to many different things, including Dr. Shefali Tsabary and her powerful teachings about becoming a conscious parent, a great massage therapist, Lilla Somerville-Marhefka, a phenomenal parenting coach, SueDeCaro, and a new (to me!) Facebook group called Weareillmatic.

I will share more about each of these over the next few weeks, but today I write about my wheelchair, Denise. Yes, I have named my wheelchair — after using one for 12 years without naming it, my coach suggested that because I spend so much (all!) of my time in it, wouldn’t it be a good idea to name it? As a way to express my appreciation for all that she (yes – SHE!) does to support me. For me to do that I had to come to grips with my own feelings about using a wheelchair, and to be honest, I hated it.

I was always apologizing for taking up too much space. I would always sit in the rear of meetings, because it would be less intrusive that way. There are meetings that I wouldn’t attend because I would need to be coordinated around. Mind you, these were my own issues. No one ever acted like, or said it was a problem. In fact, I was always welcomed brightly and warmly to whatever meeting I attended. “Here comes the Queen on her chariot!” was said more than once….

Well, after several meditation sessions and extended journaling, it came to me that I am proud of how I have to get around these days. Yes, I still have the goal of walking again someday. I will write about my wonderful Physical Therapist in another post. But I now need to say that I deeply appreciate Denise’s support. I am happy to have her, and am very pleased that she gets me around easily and comfortably wherever I need to go!

 

I had an experience today that I am still processing.

As you may recall, I am a married mother of two. This entry is about our son.  He is a college graduate with coming up on two years of employment experience, who is having a very positive work and life these days. 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 usually 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 implemented the advice that I received from my Parenting coach, Sue DeCaro – instead of directive texts, make conscious decision to send him a positive text – one that did not tell/advise him to do anything. I texted him “Hey son, 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…

When I got his text I was inspired and encouraged. It read ” Thanks Mom, work is hectic today — all is fine, just real busy.  Got a raise and promotion today. More later.”  What an unexpected, lovely 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 helped to change 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 will definitely keep doing this!

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.

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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.

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????

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!

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.