“TO BE AUTHENTIC MEANS BEING COMPLETELY PRESENT WHILE IN THE MOMENT, AND SIMULTANEOUSLY FEELING GRATITUDE”
— BELLA WELCH
By Kurt Scheidt and Tami Larson
“My sister is the most amazing human I’ve ever met.” A touching statement made by Maia Welch about her sister and this month’s feature resident, Isabella Welch (known as “Bella” to most). If you live in Mill Valley you may know or have seen Isabella strolling through the parks and streets, brightening the days of all with whom she comes into contact. Maia continues, “I consider having the opportunity to not just be born into the same family, but to witness and take part in Bella’s remarkable journey, one of the greatest blessings in my life.”
With November being the month most of us associate with thanksgiving and gratitude, we at Mill Valley Living are beyond grateful and honored as well, to share Isabella’s remarkable story. Isabella was born with an extremely rare facial cleft attaching her lip to her eye, leaving her without an eye orbit and a severely underdeveloped cheekbone. At the age of three months, she had the first of what would be 23 separate surgeries to close the cleft and rebuild the left side of her face. Growing up in an idyllic neighborhood in San Anselmo with her parents, Cherie and Peter Welch, her three sisters, Rose (35), Maia (33), Naomi (31), and surrounded by a bevy of supportive neighborhood kids, all of whom treated her like she was their sister, made coming home from each of the 23 surgeries much easier. Mill Valley Living recently spent an afternoon interviewing Isabella, and her sister Maia. Isabella recalled, “Oh yeah, it was a team effort. I spent a lot of time at CPMC (California Pacific Medical Center) and home recovering.
Everyone, especially my amazing and supportive parents were great.” And while there may have been kids saying inappropriate things at school, or the market, there weren’t any negative comments made in her neighborhood. Maia added, “Bella entered this world physically looking different – and it took me until I was older to understand that it wasn’t normal to others. It is something that didn’t seem to impede her though.”
The routine for the surgeries was always the same: scheduled for early summer or winter break so that she would have time to heal and recover before going back to school. “Honestly, what bothered me more than the surgeries was missing out on typical things kids do on summer vacation,” Isabella explained. Other than not doing what most kids her age did during summer vacation, Bella says she didn’t feel different at all.
“I never identified as disabled; it didn’t impact my capabilities at all.” Yet she was constantly reminded that although she didn’t feel different, she looked different. “I remember when I was 6 and we had a field trip at the San Francisco Zoo. A boy told me he was going to have nightmares after seeing me.” I always try to disarm people with a wave and a smile when I notice they are staring at or talking about me and certainly try to act tough and strong, but I was hurt by what people said,” Isabella remembered. That’s true”, Maia added, “but Isabella has been a force since she came out – she has a fierceness that comes with the turf of always knowing who she is. She is honest, and never tried to be anything or anyone other than herself.“
Proximity to CPMC, where her surgeries took place, was key to the process. “I felt so fortunate to be near the resources I needed to fix my cleft. I knew these surgeries were a gift. Some of them were groundbreaking, and CPMC was at the forefront.” The authenticity with which Isabella approaches her entire life, in large part, is why during her last surgery they took cartilage from behind her ear to build up her lower eyelid. She was clear she wanted her facial reconstruction to be as natural as possible, using her own body to reconstruct, rather than relying on anything artificial.
During her senior year in high school, Isabella accident with several friends. Although she felt she was uninjured in the crash, she began having incidents that involved shooting pain in her head and temporarily losing her hearing. “The first time I was in a car with friends the pain was indescribable, like a thousand knives poking in on one spot on your head. But the stranger thing was I could not hear my friends in the car talking, but they were.” The episode lasted about two minutes and then went away.
A few days later, while washing dishes with her sister and mother at their home, it happened again. “My Mom and sister thought I was trying to get out of doing the dishes; I called my dad, whom I had told about the previous incident, and he said we are going to the hospital.”
The trip to the hospital turned into a 17-day ordeal, as the pain evolved into a debilitating migraine. While at UCSF, the Doctors recommended a full body scan, which revealed a dissection and as a result, created a pseudoaneurysm (a bubble or bulge that forms in the artery due to the weakened arterial walls). A dissection is a tear or damage to the inner wall of an artery and can lead to aneurysms. The doctors believed the dissection was most likely a result of the car crash but couldn’t recommend surgery due to the location of the dissection in her artery being in an extremely sensitive area. The chances of her dying during the procedure were extremely high.
While visiting the Dermatology department at UCSF, by a Fellow who concluded that perhaps she was suffering from a genetic disorder called Ehlers-Danlos Syndrome, or EDS. “It was a pretty simple examination,” Isabella remembers. “They checked the elasticity of my elbow skin and felt my skin. That was it.”
There are only two labs in the country that are set up to do the genetic analysis required to properly diagnose EDS. In March of what should have been her second semester, she provided a blood sample that was sent to a lab for the diagnosis. Six months later, during her Thanksgiving break of her freshman year at the University of Hawaii at Manoa, the results of the testing confirmed she had vascular EDS (vEDS)”, the most dangerous of the 13 forms, as people who suffer from it are prone to artery ruptures and aneurysms. Although there is no cure for EDS, there are ways of minimizing side effects, which for vascular sufferers involves mostly maintaining a low blood pressure to keep pressure off any artery that may have a dissection.
EDS is an extremely rare, inherent disorder. Isabella is afflicted with what is known as Vascular EDS, or vEDS. It is not clear how many people suffer from vEDS, but estimates are 1 in 200,000 in the United States. Issues with those that suffer from vEDS include aneurysms and artery dissection, the switch of the gene that causes vEDS impacts the collagen structure that makes up the connective tissue, for individuals with vEDS that also includes the connective tissue that makes up the wall of the vascular system, leaving her vascular system very fragile and more susceptible to such dissections. Other symptoms of vEDS are mostly connective tissue issues, primarily skin, bones, and overly flexible joints that are subject to dislocation. vEDS sufferers typically have translucent, soft skin that is prone to bruising and is very elastic. Pain and fatigue are also common in most cases.
Diagnosis in hand, Bella did return to school, but the symptoms suddenly became much worse. In three months, she visited the emergency room of the local hospital 16 times, mostly for pain management and dislocated hands, elbows, shoulders, and knees. During that period, she rarely left her bed except to eat, use the bathroom and go to the E.R. “The pain would start in my legs and move up my body,” she recalls. “It felt like my muscles were pulling away from my bones.” The initial doctor’s recommendation was to combat the pain with pain medication. “Of course, the Western way of dealing with pain is generally pain medication first”. Initially, Isabella went the conventional way and used what they prescribed to deal with her ever-present pain. At the same time, she started battling depression. “Oh yeah, I was depressed. And I felt sorry for myself, the ‘why me? ’thing.”
In 2017, Isabella’s junior year in college, there was a shift in her outlook on life. “Not overnight, but rather a shift in my perspective, which had been terrible,” she said. She enrolled in a Biofeedback Facility in Texas. While she was there, the emphasis was on dealing with her pain in a holistic manner, rather than using pain medication and traditional methods of pain management. The regimen at the facility included acupuncture, diet, meditation, exercise, and breathing exercises, all of which she incorporates into her daily life today. She also learned to manage her stress levels. Stress can be one of the major contributors to high blood pressure, which is what people with vEDS need to avoid at all costs. To combat stress, she discovered how to activate her parasympathetic nervous system, which slows the heart and breathing rates, and in turn, steadies blood pressure.
“The sympathetic nervous system is more of a fight or flight response to any stress in your life. Parasympathetic calms your body. Triggering the parasympathetic nervous systems can be achieved in a variety of ways, including breathing, yoga, meditation, exercise, and nutrition.” Isabella said.
The exercise portion instructed her on ways to exercise without raising her blood pressure, which she constantly monitors while working out. “If my blood pressure gets too high, I stop.” She is currently producing a series of instructional exercise videos for those that suffer from vEDS.
In addition to dealing with the physical aspects of pain, Isabella has managed to find ways to battle the psychological effects of living with a life-threatening disease.
“It didn’t come easy. I was at a place of complete hopelessness and despair before my stay at the biofeedback facility in Texas,” she said. “I realized during the shift in my attitude, the only thing that is going to change this is my perception of it. Even as a child, I noticed early on, that when I was very afraid before or after my surgeries, the recovery was harder than when I wasn’t. This led to me learning how to push the fear out of my mind and just trust that all would be fine. This instinct carried through to adulthood but has evolved from ‘pushing’ it away, to surrendering first, then I can release and transcend the fear, rendering it powerless. This unleashing of fear’s shackles creates the space necessary to shift my perspective from the things I can’t do to those I can.”
This ascension to a newfound self-awareness and releasing the negativity she felt, was the impetus for her noting the differences between her cleft facial reconstruction and dealing with the mental effects of living with vEDS. “You can compartmentalize the intense pain of surgery because you know that pain will only last 6 weeks. When something seems like it’s never going to end, however, and it’s only going to get worse and doctors can’t help you, you reach a point of hopelessness.” There is now a difference in how she perceives her medical issues.
“The cleft is something everyone can see. It is visible, but it does not affect my life. The vEDS is invisible to others, but it affects my life tremendously.”
There is no irony lost on the fact that her EDS symptoms began materializing shortly after completing the surgical restoration of the left side of her face. “Yeah, it is ironic. I went from an issue that required 23 surgeries to one where I am at a very high risk of any sort of surgery,” she noted.
Isabella is now 27. She has come to a period in her life where she has realized she is beautiful. “I had a lot of confidence growing up but didn’t see myself as beautiful until 5 or 6 years ago.” Meditation and mirror work helped her realize her beauty. “I arrived at a point where I would sit and feel the hurt, frustration, and sadness, and as a consequence of doing this, I didn’t hold on to these feelings anymore,” she recalls. “I gave myself grace and finally allowed myself to feel”.
The self-realization of her beauty was bolstered several years ago when she participated in a project of famed British photographer Brock Elbank, known to many as being one of the top fashion photographers in London. More recently, the artist had established a reputation for creating photographic collections of non-mainstream subjects, including a series of men with beards, and an exhibit of 150 people with faces dominated by freckles. Maia has always been a fan of Elbank and nearly wrote to him to encourage him to do a series on people with scars. As Maia recalled,” It seemed fitting because Bella was always a proponent of advocating people go beyond what they can visibly see and rather take time also to understand the full spectrum of implications, including those which are invisible, and sometimes, can even lead to death”. In fact, in 2012, while still in high school, Isabella took it upon herself to actively engage with an organization that provided pro bono surgeries in developing nations for individuals with Cleft. She ultimately ended up speaking at a conference and began fundraising for a mission trip to Vietnam.
Serendipitously, Elbank did end up doing a scar series which he later claimed was always something he wanted to do. When Maia first realized Elbank was embarking on the series, she reached out immediately and made the introduction to Bella. Soon after, Elbank invited the two sisters to London where he shot multiple, stunning portraits of Bella. “Growing up, there was no one who looked like me,” she remembers. “I never thought that someday I’d be doing modeling.”
She describes the current state of her vEDS as “pretty good”, although symptoms of vEDS come on spontaneously. “I can go months without symptoms, then wake up one morning in severe pain,” she explained. In December of last year, she had a sudden onslaught of pain in her leg. The issue was diagnosed as a blood clot, and she had risky surgery to remove the clot at USCF. “The options were to either undergo a high-risk surgery or lose my leg,”, Bella recalled. “I opted for the surgery.”
Today, Bella’s passion is to help bring awareness about both her rare diagnosis and her ongoing work to help create awareness about inclusion. She told us, “I want to help educate people on all I’ve learned about pain management and living with vEDS, as well as advocate for those born with facial differences.” Social media has helped spread the word. Instagram has helped most, where she describes herself as a Resiliency Advocate. “When I was a kid, I shunned social media because of my face issues,” she recalls. “Now I think it’s great to reach out to people who are going through what I have and am still going through.”
Bella is honestly one of the most incredible people you will ever meet. “Authentic”, though very accurate, just doesn’t come close to adequately describing what most can only feel while in her presence. Maia said it best, “Bella truly shaped the foundation of how I want to walk through this world, with profound grace, and yes, authenticity.”
Thank you, Isabella, for sharing your wisdom, authenticity, and beauty with our community. You’re an inspiration to all!