Finding Grace

I haven't started the copaxone.  A specialist said it's okay to wait 6ish months to start if I'm trying to get pregnant.  I'm taking steroids to manage the pain...after 10 days of prednisone, I am exhausted. My throat is soar and my body is achy. These have been trying, extremely emotional times with bursts of crying and anger and overwhelming feelings of depression and uselessness. My husband has been supportive, but it hasn't been enough to make me feel better. My whole body has been tense and full of anxiety. I've felt overwhelmed - as if I'm being swallowed alive by a tsunami of fear. This has been my state of mind for 10 days.  Funny, a friend of mine who I asked to give me a massage told me that she'd just dreamt about me being thrown around in rough waves and she saw Matt watching helpless from the shore.  I called her within a day or two of her dream.

I've been told to avoid stress, but how can I avoid it in the Bay Area when I'm driving from place to place for treatment?  I recently went down to San Jose for my scalp-upuncture appointment with Dr. Zhu's Neuro-Acupuncture Clinic, but spent the night at my mom's place in the Santa Cruz mountains the night before. In the morning, my car wouldn't start (my folks were already at work) and I had to wait four hours for a tow truck. I missed my acupuncture appointment. The loaner car that my step-dad offered had a flat tire - so I had the tow truck guy swap put on the spare and drove his car down to buy a new tire. The toaster also wouldn't work while I was waiting for the tow truck guy. It was that kind of day. I felt beaten and mangled and frustrated - all the while reminding myself that I was supposed to steer clear of anxiety. It was kinda funny. Kinda.

I then saw a friend from childhood days and she clearly and deliberately reflected to me that: a) I have all the patterns of MS with two lesions; b) it's stressful to try to get pregnant and could take a while; c) if I wait to take MS medications until after I'm pregnant, I'll have the stress of getting pregnant paired with the constant fear that another flareup could occur that might result in permanent damage; and d) if I just took the MS medication, I could take my time getting pregnant and not worry about a flare-up. She also reminded me that my entire life has been me going going going going...and that there may be a lot of stress that I need to change in my way of being. I saw that. When I mentioned that I was afraid of the needles from Copaxone, she suggested that I at least go to the doctor and see what it actually consisted of - 'it might just be a prick, you know?' She was right. My sister had told me that she'd had injections every day for a period of time in the past for another condition and that it was really no big deal. I have always looked up to this sister. She was the exact right person for me to consider 'if she can do it, so can I, right?', although I wasn't entirely convinced yet that I needed to start right away. But talking to my friend pointed out to me that I'd been denying that the diagnosis applied to me right then. right there. She put it so simply that I could no longer deny that my diagnosis was something that I HAD to address.

Somehow, I'd thought that I'd just change my diet and exercise and I wouldn't have to worry. But every time that my right toe tingled or a joint locked momentarily, I'd be terrified that the MS had moved to the other side of my body. Would I hate myself for not preventing the spread sooner by simply taking medicine every day...even if it was by injection?  There was no relief - ever - just panic and stress with just about everything.  A tsunami. 

The next day, I went to my scalp-upuncurist (a make-up appointment, thankfully) and said "I just wish that I could relax," "I can't even sit down to eat." Dr. Moyee very slowly and mindfully needled my head and then told me "now I will show you how to relax." With her tiny chinese frame, she stood in front of me and said 'there are three steps.' 'Step One: relax. Let calm wash over you like a shower. First your scalp, then your nose, your cheeks - especially here (as she brushed lightly on my cheek and I realized with her touch just how much strain automatically released from that place with awareness), your mouth, your jaw and all the way down to your feet.' I felt like I was too blocked up to keep up with her, but figured I'd get to it later. 'Step Two: Breathe. Breathe into your chest with a big inhale and relax your shoulders back without pushing them back. When you exhale (a little longer breath than inhale), release your shoulders." She had me do some chi gong exercises for my shoulders and arms because my shoulders were so stiff that I couldn't breathe into my shoulders without tensing up. Then, I tried again and it was better, although I could barely inhale. 'Step Three: Don't think. Focus on one thing or your breath. Don't think.' I was so grateful for her counsel. This was so simple, yet I needed it. All those years of studying yoga and meditation were beyond my grasp and I was stuck in a giant knot until she said, "now I will show you how to relax." Clearly. Calmly. Directly. Simply. I felt desperate and childlike in my gratitude for this simple lesson. She then needled my shoulders next to bring some chi to them. They automatically relaxed and then she needled my entire spine for purposes of MS relief (my entire spine was tight) and fertility (my kidneys and liver are unhappy).

When I came out to pay, my card was declined. I called my husband who was about to go into a multi-million dollar settlement meeting (he's a lawyer) and for the first time since this diagnosis, he lost his patience. He told me that I need to not call him with urgent needs that I should've foreseen coming. I yelled at him: 'just deposit money into my account right now. Just do it!" The tears flowed out and my shoulders locked up all around me. It was a rough day. He was right. I needed to get my finances in order. I couldn't figure out why I felt so out of control and lost. For the past few weeks, I'd been overwhelmed with driving from place to place to place all over the Bay Area for tests and poking and prodding by various healers to get some relief. I was bleeding money and having not yet been paid by my two clients for October's work, I didn't have the funds to cover all of these expenses. Yet I hadn't counted. I felt as if I was in survival mode - desperately trying to heal and stay calm without fully surrendering to my diagnosis and in no way being realistic about all the other needs of life, like financial responsibility and simply staying still without rushing from one place to another.

I called my mother and went to see her - tears were pouring down my face and I was almost convulsing with grief. I felt like an absolute loser at age 40 with not enough money, not enough health, not enough purpose with my career, not enough fertility, not enough fiscal responsibility and too much emotion and illness to deal with any of this. My mother assured me that everything would be okay and offered me money to see me through all of this. I was humiliated to be in that place and so very ashamed - I just started crying some more with more self-castigation. "Let me help you," she said. "I can't cure you, so please let me help you." I started crying a-new.  She did, too.  I saw how very pained she was to see me, and now my husband, suffering from the overwhelm of terror, fear and anxiety that I couldn't seem to get out of. It felt like she threw me a life-raft while I was floundering around. I held onto that. I am so very thankful to my mother. She told me that the time will come when she might not even be able to ask me for help, but she'll need it. I promised her that I would take care of her. She said she knew that. I consoled myself with the fact that my mom was investing in her future. But really, she loves me.

At that point, it hit me: I need help. I need help because I have Multiple Sclerosis and I have to figure out how to live with it. With Grace. Not like I had been - stressed and terrified. With Grace. That day, I drove back to San Francisco and walked through Golden Gate Park all the way to the deYoung Museum. It was the first time that I'd walked that far without being exhausted in two months. The sky was clear, the sunset lovely and there was a partial moon above the Opera Bowl. I was grateful for the good health that I did have and the beauty all around me. I came to terms with the need to take medicine and accepted that resisting the diagnosis was not helpful. I want to feel as good as I can for as long as I can. I realized that I'd lived a very stressful, busy life and had let my yoga, meditation and even healthy eating habits slip by the wayside.  It's time to get my practice back. I can take western meds PLUS I need to lower my stress and re-develop a healthy mind-body baseline from which to heal and not relapse. 

I am certain that I can get back to a vibrant life with time for recovery. My left side is still challenged, but perhaps I can get a regular yoga practice and continue to get the energy going again through eastern practices. Eastern and western modalities of healing are not mutually exclusive, they can be complimentary. It's time to make a road map of the right steps for recovery through surrender and hope. I thought about all of the wonderful healers and creative people that I know. I envisioned a fundraiser so that I could raise money and awareness of MS and at the same time let everyone know that I have this thing so it's no longer an akward and exhausing conversation that I'd have again and again. If life throws a wrench at you, perhaps you should throw a party? I felt at peace and started thinking about how this has happened for a reason.

That night, I went home and when my husband came back from work, we processed his frustration and my vulnerability. We clearly communicated about what we needed. I agreed to be more responsible for everyday tasks, like finances.  I asked that he take his stress out some other way other than at me. He agreed. He's a saint. He's taken no end of emotional hysteria from me over the past 10 days and beyond. He actually went to the doctor for stomach pains two days ago. This is taxing on both of us. We need to find a way through this...Also that night, I received word from the government that I had passed the qualification requirements to be considered for a job. Another friend said he wanted to work with me and looked forward to talking with me in January about the possibilities since I'd written that I was completing our contract arrangement in November and needed to take December off. This was good news. A brighter experience already.

Today I went to an osteopath, Sharon Sorensen, in Berkeley. She pointed out that my left scapula fascia had fused to my muscle and this was restricting my mobility and causing my entire back to seize. With a few pokes and prods and stretches, there was relief in my left scapula (that had become more painful and tight as the steroids wore off) and other parts of my body. She mentioned that I had restricted inhalation capacity due to a tight muscle and loosened that up, too. When I told her that I was going to take the copaxone, she looked at me directly and said 'you have a clear cut case - some people only have a symptom or two, but you check off almost every single box.' What seemed so obvious to her, and apparently the rest of the world, had been seriously hard for me to accept. And now, here I was, getting acknowledgment from a healer that this is what I need. And healing. Again, east and west are not mutually exclusive.

Although I'll start the medicine, my left side is in pain. And according to the osteopath, my left scapula has been unhappy for years. It's time to retrain my 40-year old body to relieve stress, not store it. And so, I intend to create a healing recovery plan: diet, exercise, bodywork, acupuncture and of course the western medicine. I contacted a wise yoga/meditation teacher, Chandra Easton, in Berkeley, and asked if she would like to work with me to create something. I want to share this with others. My former Ayurveda teacher, Pratichi Mathur, once told me 'in the dark night of the soul, you love bigger than yourself.' I want to love myself first because I haven't been. And I want to share what I learn with others so that they can love themselves no matter what. No matter what the diagnosis. No matter what the shame. No matter what the fear or uncertainty or unknowing. There is a path through this. There is a way to grace. I'm not sure what the path is, but I intend for vitality and well-being to coalesce. Onward to Grace...

Diagnosis (Written 10/31/13)

I have been diagnosed with MS. I had no idea. None. For years, no one could figure out why I had bladder issues that resulted in urgency every 30 minutes. For years, I assumed it was normal that I would lose my balance and fall flat on my face (resulting in a broken nose on my honeymoon) or on my back or on my side – even when the path I was walking on was flat. When I couldn’t do ‘tree pose’ on one side of my body in yoga after years of even-bodied practice, I found it odd, but figured it was the result of an irregular practice over the last two years.

At Burning Man last August, when my back went out for two days and I cried in pain when I tried to turn to one side or bend over, I figured I’d just lifted too much heavy stuff without bending my knees. But then, I fell and fractured my coccyx mid-September. A few days later, my entire left neck, scapula, shoulder and arm were screaming with pain and subcutaneous itching. A tree branch couldn’t brush my arm without me writhing in pain. I couldn’t sleep without waking myself furiously scratching with no relief. The Doctor thought it was a pinched nerve as a result of the fall. I asked for an MRI, but he said I didn’t need one. At about that time, as I was walking down the stairs of my apartment building and it suddenly felt like the whole left side of my body had ‘slumped’. When I ran for the bus, all of a sudden, my knee wouldn’t bend and felt very wobbily…I couldn’t run. When I walked for a bit, my lower back ached with pain due to perhaps the fractured coccyx, but my left ankle was screaming with pain, too, and felt wobbily…what? My left foot and thumb became numb after a while. I tried to ride my bike, but my shoulder and neck and arm kept me up all night with tightness and pain worse than ever. My arm constantly felt tight – as if someone was clenching on to my muscle and wringing it in opposite directions simultaneously. I went to a chiropractor and through physical therapy and while there was some relief and improvement in mobility, my entire spine and left side of my body was stiff, hardened and totally uncomfortable. Pain became normal for me as I tried to figure this out.

 Finally, I pleaded with my Doctor to get me an MRI for my cervical spine to see if I had pinched a nerve. Five weeks after I initially saw him, he set it up. The technician said as I left, “It’s not a pinched nerve, you’ll probably be back in here soon for a brain scan. It could be MS.” I didn’t really take him seriously, but it certainly registered. An Ayurvedic master had previously asked me if I had MS when I'd complained of bladder issues.  She looked at my tongue, took my pulse and asked 'Do you have MS?'  'Of course not,' I balked.  The word MS returned again...What I didn’t know that the tech saw on the scan was that I had two lesions in my spinal column. One was old and small. The other was new, on the left side between C2 and C3 and shaped like a flame.

I was in mediation training for several days to learn how to be a facilitator in prisons for victim offender healing circles. It was heavy stuff. On Day 3 of the 4 day training, I received a voicemail from my doctor telling me that ‘concerning lesions in my cervicle spine’ were in my MRI and he was referring me to a neurologist immediately. I googled ‘concerning lesions, cervical spine’ and MS came up again and again. I remembered the words of the technician. Images of wheelchair and drool came to mind. I called my doctor. He called me back and said ‘it could be nothing’ or ‘yes, it could be MS.’ I remembered the words of the Ayurvedic Master, Sarita Shrestha so long ago and started to panic.  After two more MRIs, blood tests, a vision test and a spinal tap, the diagnosis was likely MS.

I am 40 and a newlywed. We want to have a baby. Toxins in my body scare me. I automatically went into the mode of researching alternative treatments so that I wouldn’t have to take medication. I barely researched MS. When I did, I was terrified about the worst-case scenarios that I saw. My family and husband weren’t comfortable with alternative treatment instead of medicine.  But, I wouldn’t listen - I was sure that I could find an alternative to deal with this. My sister asked me very carefully to listen to what the doctor said about medication instead of listening for what I wanted to hear. I didn't listen.  I found a miracle acupuncturist and was certain that I could rise out of this with steroids and acupuncture until after I was successfully pregnant. I thought, “I’m not that bad.”

And then a friend with MS called me. He gently pointed out that the myelin sheath is being eroded and that if I don’t stop that erosion and the sheath disappears, I’ll have irreversible consequences. He reflected to me that I actually was ‘that bad’ due to the fact that I’ve worn a maxi pad every day for two years, can’t carve a pumpkin for Halloween because it’s too heavy to hold and lift with my left arm, and fall to the ground somewhat regularly due to imbalance. He didn’t mention that I can’t run, ride my bike or lift heavy things with my left arm. He didn’t mention that I feel like I’m sloping on my left side when I walk or that I drag my left foot and trip at least once a block as I walk through the city streets. But, once I heard him, I noticed all of those things. I counted how many times I tripped on nothing as I walked through the park. Too many times. I paid attention and, indeed, I am ill. I need help. And I need to act as soon as possible to avoid permanent damage. But, how can I resolve to inject myself everyday with toxins?  There's got to be something else that I can do...

Shamans say that illness comes to someone who has ignored their ancestors and their universal purpose in this life. Once you surrender to the dark illness that consumes your body, your purpose comes out of it brighter than before. I see that I have turned off to my body in the past two years. I stopped my regular yoga and meditation practice, stopped keeping a journal, gained 20 pounds, haven’t been able to find gainful employment at the amount that I deserve and have generally watched a lot of TV, eaten out a lot and had a lot of wine every other night. I’ve been dull, mute, lifeless. All the while, my body has been wanting expression, health, wellness.

My mind has been training for mediation and volunteering to give and give and give, but it appears that I’ve given so much of myself that my livelihood has suffered. Not anymore. I’m awake. What’s good about this? I want to pay attention to my soul, my spirit, my body, my health. I want to use my gift of words and intuition to build a bridge with others through hard times. I’ll surrender to medicine just now, but trust I will build my health up enough to be back in tune with every bit of my body. Health, vitality, luster and of course a beautiful baby (I’ll go off meds when (s)he comes) to celebrate the beauty of life and all of its lessons.

Diagnosis: I have 90% diagnosis of MS due to 3 MRIs (cervical, brain and thoracic), lots of blood tests, a spinal tap and a review of all of my symptoms. The Doctor can’t name which kind of MS it is b/c this is the first flare-up; he’ll only be able to diagnose with time. There are two lesions (one old, one new) in my cervical spine. The brain and thoracic have a few white spots, but nothing to be concerned with. The one on the left is at C2-C3 and is the new one. As a result, I have spasticity in my left limbs. The bladder issues are older, but may also be related to the new lesion; who knows?

Treatment: I want to get pregnant, so copaxone seems to be the only option. This is a daily injectable and I’m hoping than an epi-pen version exists. I’ll go off copaxone as soon as I’m pregnant, while pregnant and while breastfeeding. I may then change to a different drug that has a higher success rate and is an oral pill. I’ll get better. Life is good. Hopeful I am, but I feel so mangled by this all. I was going to be Marilyn Monroe, but feel rather like a mangled Marilyn. Matt doesn't feel so hot, either. Here we are as Marilyn and Hugh a/k/a Jew Hefner - after being ravaged.