Ilene’s Story

Site created on May 20, 2019

Dear ones, thank you so much for keeping up with my progress through this page. Just to clarify, if you’d like to support my family and I financially during this challenging time, please give a gift through GoFundMe (link is here: https://www.gofundme.com/1n5wjrx280&rcid=r01-155865238575-77b8c15a462a40ef&pc=ot_co_campmgmt_m and can also be found on this page through the “Ways to Help” link). Tribute donations through CaringBridge go to help CaringBridge offer this wonderful service but do not go to our family.

My story: A rare connective tissue disorder and a rare brain tumor

Ten years ago, I woke up with awful vertigo, jaw pain, and terrifying brain fog. I thought I had an ear infection because I was dizzy. The ENT diagnosed me with TMJ (tempomandibular joint dysfunction of the jaw) which explained the jaw pain, but my ears were clear. I then went through months of panic attacks, vertigo, memory issues, brain fog, dizziness, fatigue, and cognitive challenges before receiving a diagnosis of PCOS (polycystic ovarian syndrome), which my doctors said explained “all” of my cognitive and vestibular issues. They told me that once my hormones normalized, my dizziness and cognitive challenges would subside. I was 18, and spent the summer after my first year of college very ill and desperate for answers. No more were found, and every doctor since has discounted these symptoms. Whether attributing them to me being young, female, stressed, a graduate student, a vegetarian— the list goes on— no doctor ever took what we now know to be neurological symptoms seriously.


I learned to live with the dizziness and learned to compensate for my cognitive struggles. I found peace with my new normal, though I also blamed myself for not “getting over it” as doctors told me I should and ultimately would. Ten years later, my symptoms have waxed and waned but never gone away. I had many years where I struggled but my symptoms were manageable, and I came to believe I had made the symptoms up because no doctor ever took them seriously or investigated further. 


When I had imaging done a few weeks ago to examine me for Craniocervical Instability, which we found, we also found a fairly large mass on the pineal gland of my brain. The pineal gland sits in the direct center of the brain. It is known as the “third eye” for its purported link to spirituality and psychedelics. The pineal gland is often called the appendix of the brain, because even today doctors are not sure exactly what the pineal gland does. The two most abundant compounds in the pineal gland are serotonin and melatonin.


Until the last few years, the medical establishment did not believe pineal tumors provoked symptoms, since, again, the pineal gland’s function is not yet known. Then, in the last few years, several neurosurgeons have done more research into the function of the pineal gland and the effect that pineal tumors can have on the human brain and body. There are fewer than 10 surgeons worldwide who take these masses seriously and resect them, but the emerging literature does not lie— around 98% of patients who have pineal tumors removed have at least partial resolution of their symptoms. 


For the past 9 months, while my Ehlers-Danlos Syndrome (a genetic and degenerative connective tissue disease with no treatment or cure)  has flared its ugly head, I’ve dealt with progressive and debilitating neurological symptoms— muscle spasms and twitching, muscle weakness, poor depth perception, increasing dizziness and vertigo, burning and stinging body pain, ocular disturbances like floaters/spots/static in my vision, worsening nausea that’s now nearly intractable, tinnitus, insomnia, tremors in my hands, increasing memory problems, and rapidly escalating cognitive disfunction. During the process of diagnosing my Ehlers-Danlos Syndrome, I had two separate medical practitioner say things akin to “You certainly have (x and such condition associated with EDS), but your symptoms are FAR more severe than they should be compared to your level of disfunction. You likely have something going on neurologically.” And they were right.


I am infinitesimally lucky that the very first doctor who reviewed the MRI scans of my brain was not only an expert in EDS and Craniocervical Instability, but also one of a tiny group of neurosurgeons who resect pineal tumors. I believe he may be the only surgeon in the world who specializes in both conditions (EDS and pineal gland tumors), and he was the first person to view my films. He told me that both the mass and my neck instability could be contributing to my neurological issues and pain. He told me— “You tell me. What’s worse right now? Pain from the instability, or your cognitive and neurological issues?” The latter, I said, and he replied that was likely the mass. We may very well be able to avoid a fusion (implantation of a metal rod into my spine, fused from the C3 vertebra up to the occipital bone of my skull) by removing this brain tumor. That decision will need to wait— we will reassess post-removal of the mass and determine next steps. There is also a strong possibility I may need surgery on one or both of my shoulders to treat severe impingement syndrome, which has caused mind-bending pain and increases my risk for dislocations.


I am so grateful that the very first doctor I discussed this tumor with took it seriously. It is striking that, on that day 10 years ago when I awoke with vertigo, brain fog, dizziness, and memory problems, that I thought and apparently said out loud, “I think I have a brain tumor” (a high school friend reminded me of this fact recently). The fact is, I had a CT of my brain that summer when I was diagnosed with polycystic ovaries, to check my pituitary gland and other endocrine system components in the brain. The mass was likely present. Literature shows that around 10% of healthy adults live with small asymptomatic pineal gland cysts, so I am sure the radiologist did not even note it on my CT report.


I am a mess of emotions right now. Hope, for the quality of life I might one day have with this brain invader gone. Anger, that it’s taken so long to arrive at this place. Terror, facing major neurosurgery. Grief, reflecting on all that my health challenges have stolen from me. And gratitude, for the support I’ve received and will surely continue to receive.


I will be undergoing surgery to remove this tumor on June 5. Dr. Sunil Patel at MUSC Hospital in Charleston SC will perform the procedure. I will be inpatient for a few days and then will remain in Charleston for another week in case of complications and so I can have my staples removed by Dr. Patel’s team. 


So many people have been so generous with their support and affection during this awful process. There have been days I’ve struggled to find any light at the end of this terrible tunnel, and my web of support and care has saved me.


Because of the seriousness of this procedure and the length of the recovery time (which is pretty much unknown as the surgery is still so rarely performed), I will not be returning to my beloved job as minister of the Unitarian Universalists of Transylvania County. I am devastated, as I know so many of my wonderful congregants are as well. This has been simultaneously the hardest and the easiest decision of my life— the hardest because I am giving up the thing I’ve worked the hardest for of anything in my life, and the easiest because I know how very ill I am. I will be applying for benefits with the private long-term disability insurance that my congregation so generously included in my benefits package. This will ensure I regain a percentage of my income while unable to work. This is not SSI or SSDI and so should be a smoother process, though of course it’s an added terrifying stressor as I reflect on all that’s ahead in this journey.


I’ve chosen very intentionally to be open about this process. The last time something so major happened in my life (being wounded as a bystander in a gang shooting 4.5 years ago— I know, it’s almost as if I’m making these wild things up, if only), I held the news close and have regretted it ever since. I am literally still sharing the news of that awful trauma today. So, this time around, I’ve decided after much prayer and reflection to bring my community into this hard reality, now.


Close friends, immediate family, and my congregation have all been wonderfully supportive with this new and challenging development. And, I am grateful already for the outpouring of care I’ve come to expect from this wildly generous community of mine. Thank you, from the bottom of my heart. For those folks who’d like to know how best to support me, my amazing spouse (without whom I’d surely not have survived to this point), and our families, I have created this CaringBridge page for you to view updates. It is linked to an Amazon wishlist of helpful supplies, as well as a TakeThemAMeal page for meal coordination after surgery. This page is also linked to a GoFundMe campaign to help us recoup some of the immense financial toll this has taken and will continue to take. For folks who’d like to send Amazon supplies or cards, our address is 2 Poplar Hill, Mills River NC 28759.


We have no reason to believe that my “brain invader” is malignant. It appears to be cystic but we will not know until it is removed. Frequently, large symptomatic pineal masses appear cystic but, upon removal, are determined to be pineocytomas or pineoblastomas, or other extremely rare tumors. I am excited to get to donate my body to science while still being alive— my incredible surgeon is planning a study of these pineal masses and needs only a few more before he can begin.


I honor how hard this news is. I am grateful for your support and love. My incredible community around the world has given me the will to live even when things have been so bleak and frightening. 

You can find ways to help (meals, funds, snacks, and supplies) under the “Ways to Help” tab via this CaringBridge. We have an Amazon Wishlist, a GoFundMe, and a TakeThemAMeal set up so that our generous friends are best able to know how to help us during this challenging time.

We now have a comprehensive way to keep folks in the loop as I progress through these challenges. I welcome your prayers and the support that so many of you have offered in a myriad of compassionate ways. Thank you.

Newest Update

Updates, Cross-posts, and more

Journal entry by Ilene Tompkins-Gillispie —

Hello dear ones! It has been a few days since I’ve updated, and to me that’s a good thing. It signifies ultimately that things are not so urgent and volatile that folks will worry without daily updates. And, I do like to keep y’all in the loop— especially because this healing process is far from complete. I‘m not planning to give a “verdict” on my healing for quite some time— like, a year. That’s a conservative amount of time to wait before evaluating a new normal. Of course, I’m supremely impatient with myself so, at not even 4 weeks, of course I’m constantly judging and worrying and evaluating and testing myself when I’m the grand scheme of things I ought to be just, well, resting. You get the picture, though. Basically, all major brain surgeries leave the patient with a brain injury. For my spouse, this was a traumatic brain injury (sustained during an accident), and for me it’s an acquired brain injury (sustained as a result of the tumor and of removing said tumor). 

First, some new updates: finally the small ulcer next to my incision seems to have turned a corner. Funnily enough, just *seeing* the doctor was enough to make some progress— it began to really improve after seeing the doctor but before actually filling the prescription for the antibiotic ointment she prescribed! It still has a ways to go in catching up with the incision’s healing but it’s looking much better.

My incision is doing very well. It does get swollen and painful at times, and I can feel some bumps and divots that may just be healing tissue or could be bone/hardware— no way to know until I see my surgeon again at the end of August and he reviews my MRIs and examines me. 

My neck and occipital area are acting up, which is to be expected— lots of muscle and other tissue was cut during surgery. It’s painful and frustrating, and combined with my Craniocervical Instability symptoms, my neck is definitely a problem zone. But, still— my constant occipital headache and chronic neck pain are moving toward improvement after removal of the tumor. On the left left side today, I woke up with swelling of a lymph node/muscle attachment site. I’m not sure what is there (anatomy isn’t my strong suit) but I’ll bet my massage therapist can both tell me what it is and help it to feel a little better. I’m seeing him again today.

Today is the one-week anniversary of being back on the road, which is going well. I’m trying to only drive when absolutely necessary, and to make as few stops as I can. It feels good to have this independence, while also trying to hold the tension around not overdoing it.

It’s been great to see friends, my therapist, neighbors, parishioners, etc.. I also booked a trip to Washington DC to spend a week with my parents in mid-July. I can’t remember the last time I had a week’s worth of time to spend with them, and I’m really looking forward to it.

I’m enjoying working in my garden during cooler times of day. Dustin moved my herbs up to our porch so they could have a nicer environment (better sun, less interference from grass and weeds) and also so I could access them easier (no bending down because they’re now elevated, and they’re closer to the house so I don’t have to go all the way out to the garden). He also filled up a new raised bed for me with the soil he bought me as an anniversary gift. This bed is higher than the others, so I won’t have to bend down as far (challenging both for my head and for my joints). Yesterday, I harvested our first cucumbers of the season which felt wonderful. This week, I braided our cured soft-neck garlic (as well as a few stragglers of hard-neck and elephant garlic that aren’t really meant to be braided, but which I beat into submission with my braiding skills). I’m also taking frequent walks around our land to patrol for wild herbs and berries, which are popping up all the time. Tonight, my friend Mary and I will be making a big batch of my favorite Tulsi healing salve, made with my homegrown tulsi and many other healing herbs. It’s a staple for me during summer, when I’m constantly itching from mosquito bites, garden rashes (squash, cucumber, and tomato plants all make me itchy), and sunburns.

I can’t believe that on Wednesday it will be 4 weeks since my surgery, and on Friday it will be one month. In many ways I’m doing better than I “should” be, and I know that healing is not linear or predictable. So, I am trying to celebrate the victories both large and small, while also treating myself very gently and acknowledging that challenges (either momentary or persistent) can and will likely arise.

I wanted to share a cross-posting of a Facebook post I made today. I’ve been struggling terribly around not being able to DO much, and realizing how much my identity is being challenged, re-shaped, and really exploded throughout this process. I cry most days in grief or frustration at all I worked for and all I’ve lost. And yet there is the gratitude and peace behind it all— just waiting for me to become still enough to live into it.

”I haven’t had a consistent daily devotional practice for the last few years. Part of this is because I’ve been constantly steeping in sacred texts/music/etc. as a chaplain and a parish minister— sharing words of wisdom and sacred songs with others and getting to absorb them myself (at least, when I’ve been most able to be present). And, as many ministers and chaplains may have experienced, the nature of this work can be so all-encompassing at times that we neglect our own spiritual practice (ironic but undeniable). 
 
I can remember vividly the last two periods of my life when I have reliably done daily spiritual practice at a particular time of day. In the summer of 2014, I was serving as a chaplain intern at the Durham VA hospital, living alone, working long hours in a city that was far from home (though Durham would become a home in a few more years). I knew very few people and had very little furniture in the small apartment where I lived for 12 weeks. My days were very predictable— wake up at 6:30, eat breakfast and do spiritual practice, walk through the Duke forest on my way to work, work from 8-4:30, walk home, remove my hospital clothes, eat something, and fall into bed early because I was so exhausted by the depth of work that we were doing. I would usually fall asleep to long recordings of sacred music— repetition of one mantra for multiple hours, or long playlists of classical Sikh music. Interspersed with overnight on-call shifts at the hospital and Sunday mornings at the Sikh temple, this was my life for 12 weeks. Similarly, in the summer of 2015, I was a Critical Language Scholar in Chandigarh, India, and my days were similarly predictable. Waking at the same time each day, riding in the same rickshaw to school each and every day, language classes in the morning, lunch at school, tutoring and music lessons in the afternoon, late afternoon tea at home, then homework and dinner and conversation, and then evening spiritual practice. Interspersed with trips near and far to visit different historical Sikh temples, this was my life for 10 weeks, and it helped me heal from my recent descent into PTSD after I was accidentally wounded in a gang shooting at home in Boston.
 
In Durham, my spiritual practice looked like this: I would eat the same thing for breakfast each and every day while sitting on my meditation cushion, then meditate and sing and play a small amount of devotional music (kirtan). I would listen to more kirtan on my walk to work, and would often bring a lit stick of incense with me for my walk through the forest. In Chandigarh, it looked this way: no matter how busy or hard my day, each and every night I would take a hukamnama of Guru Granth Sahib (opening the Sikh scripture to a random page, considered the “message of the day”). I would read the hukam, meditate on it, maybe write a little about it, and then listen to a recording of that hymn if I could find one (or another favorite hymn if I couldn’t). 
 
I’ve had many daily devotional practices over the years— writing in a gratitude journal, reciting Christian prayers or psalms before bed, chanting Sikh prayers in the early morning, meditating and doing asanas before bed, working with prayer beads. Each has been a gift to me in some way. And, other than the constant repetition of some mantras, and playing devotional music when I could, so much of this has fallen away.
 
In this time of recovery and healing, I’ve become more and more frustrated at not having something to “do.” So much of my worth, it turns out, has been wrapped up in my identity as a doer, and right now I am able to do so little, at least in comparison to what I’ve been used to doing. I realized awhile back that, while I no longer have a “job” in the traditional sense, I certainly have a job right now, and it is to heal and strengthen my body and spirit as much as possible. After that realization, I was hit by a ton of bricks when I realized that spiritual practice would be intrinsic to this job. That I had been re-hired for the job of daily spiritual work.
 
And so, here I am. Last night I played my harmonium for the first time and sang Sikh hymns. This morning, I am listening to kirtan and reading sacred words. Last night I sewed a bag for my prayer beads, a gomukhi bag— shaped like the mouth of a cow, or so the saying goes in Vaishnavite Hinduism— so I can add one more sacred item to my daily routine, a reminder that, whether ill or well, whether employed or not, the only real job there is is to do the work of the spirit, the only work that is truly “real.” 
 
“Your actions seem sweet to me. I beg for the treasure of the Naam, the name of God.””





Thanks for following along, dear readers. Your care and prayers are a blessing during this formative time in my journey.



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