Family fights for 'normal' future
Jainey Hokanson's relatives struggle with her navigation of early-onset bipolar disorder
On a recent Thursday night, Jainey Hokansons entire family crowded into the stands at Cedar Ridge Middle School to celebrate a small miracle.
For an hour, their 13-year-old daughter and sister was just a normal choir student, free from the everyday stresses of living with bipolar disorder.
You get a glimpse of what she can be, and thats why we keep treating and going through the regimen because we hope that we can get more of that, said Don Hokanson, Jaineys father. Tonight, I watched her stand with the choir and look beautiful and sing along and participate. Thats one of those little miracles.
Don and Jeannine, Jaineys mother, support each other, their family and Jainey through the ups and downs of living with bipolar disorder.
In raising their youngest daughter, the couple has to be more than parents.
Youve got to be part doctor, Don explained, and youve definitely got to be part pharmacist.
Jeannine said that amidst her duties of a mom, including roles such as coach, driver, and caretaker, she also finds herself being a psychologist.
She has redefined my role as a mom, she added. You have to be a lot more.
Don and Jeannine also focus on supporting each other, all while trying to be more detached than a regular parent, something the couple agreed is necessary when raising a bipolar child.
The two have each others backs, stepping in for the other if one feels calmer and better prepared to handle one of Jaineys episodes.
Every situation you wonder, is this a normal situation where I should act normally or is this a bipolar situation where I react differently? And you guess wrong half the time, Don said.
Jeannine said she used to hear, Just wait until she becomes a teenager, a lot in regards to Jainey.
And I would always say, Please dont say that, she added. Because if all you do is look toward the future, then you worry about stuff that youre going to have to worry about when you get there. Then youre worrying about worrying about worrying, and it never does anybody any good.
When Jainey began experiencing the changing hormones that come with being a teenager, she started to spiral downward. Although her medications are in order now, there is always the possibility that she could hit a major down period again, but her parents try to focus on the good.
Shell have a good day, and a good day can keep me going for a long time, Jeannine said. Then you know, its going to come again.
Living in the now means not thinking about the future.
Any plan kind of goes on hold, because you dont know, Don said.
His experience with adults dealing with bipolar disorder is that they dont have ties to family and friends because they have burned those bridges.
The future is really disturbing for people suffering from this disease, he noted. Whether they fall into (those quagmires) or not, its going to be a fight or battle their whole life. Thats worrisome.
Portland resident Julie Fast, 51, had her first manic episode at age 17. By age 19 she had settled into a severe depression.
For more than 10 years, Fast struggled with living with the symptoms of bipolar disorder undiagnosed. But when a diagnosis finally came in 1995, when she was 31, it still didnt spell relief.
Id lost my life basically, Fast said.
In three years she had gone through three different medications. Eventually she came to the conclusion that there had to be another way.
I went to my psychiatrist and said, Im not getting any better, what do you have for me? and he said Theres nothing, Fast explained. In six months, I wrote a treatment plan for myself.
Fasts approach focused on treating her individual symptoms, a technique she eventually began sharing with others through books and public speaking.
Although she indicated she is more than 70 percent better than where she started, Fasts life with bipolar is still a daily struggle. She still deals with her specific diagnosis of Bipolar II, which means she suffers from rapidly cycling daily mood swings and an abnormal amount of psychosis.
Bipolar is the No. 1 thing in my life, and I have to treat it first or I dont function, Fast explained. Just like anyone with a physical disability, I am disabled. Everything that I do all day long has to be thought of in the realm of bipolar disorder.
The key to Fast treating her own symptoms is the goal of self-regulation.
Fast said while its true there are many people with bipolar disorder who ruin relationships, she believes the cause of that is an unmanaged disorder.
People who treat bipolar disorder successfully are the greatest friends in the world, Fast explained.
The self-awareness that comes with self-regulation of symptoms can be a huge asset to a relationship.
And that makes for an unbelievably good friend, Fast noted. I think we can bring something to the table thats different than most people, because were fighters.
While almost every bipolar adult has a story of struggling through work and school, Fast said she sees an abnormal focus in people with the disorder as the reason.
I think thats why we get disappointed so easily, she explained, because of what it takes away from us.
Those disappointments sometimes make for disappointed parents. But Fast said the key is to learn to set realistic expectations of bipolar family members and not judge them by what is expected of an average person.
We cant do what others can do, Fast said. We cant be measured (in regards to) people without mental health issues. And its hard for families.
Because of her 30-year bout with depression, Fast is only recently able to enjoy and feel the impact she has had on the world with her activism.
Through the work she does, Fast hopes to help bipolar adults and those around them understand the disorder.
Those of us with severe mental illnesses are just people with an illness, Fast said.
Hope for the future
Michele Veenker, executive director for the Clackamas County Branch of the National Alliance on Mental Illness, spends her days supporting people with mental illness.
Primarily, NAMI Clackamas County provides several support groups for people living with mental illness and their families throughout the county.
The organization also provides a 10-week peer-to-peer class that is taught or facilitated by someone who has a disorder. The classes are free of charge, and NAMI staff occasionally dive into advocacy as well, by providing support in the hospital or helping someone fill out paperwork and understand their medical bills.
One of the biggest problems Veenker sees for adults dealing with bipolar disorder is a lack of services, or if they do find those services, unreasonable wait times to be seen. There also are challenges with housing, accepting a diagnosis and especially stigma.
Veenker said that while NAMI is a great place for people to meet new friends, adults with bipolar disorder who lose touch with a support system is something she sees a lot.
It is really common, Veenker said. People do things when they have a mental health disorder that the rest of us dont understand and are uncomfortable with, and we distance ourselves.
Manic episodes can result in uncharacteristic actions such as affairs or spending lots of money, things that can be hard for loved ones to forgive.
On the other hand, there are always people who deal with their disorder in a sound way.
Theres always hope, she said. People can recover no matter where theyre at.
One of Veenkers notes of advice to Jaineys parents was to continue supporting each other and taking care of their own mental and physical health.
And just to love her, Veenker added. Theres something in there thats going to make everyone that comes in contact with her a better person if they will allow it.
Don and Jeannine said they find a lot of support through friends at church, for both themselves and Jainey.
Shes got a great group of girls her age ... and theyre really good with her, Don said, adding that while people sometimes get scared with Jainey and back off, her church friends respond exactly as Don and Jeannine hope.
Her friends that have grown up with her, they know when shes having a bad day and they just love her and put up with her, he noted.
While planning for the future is minimal in Jaineys life, Don and Jeannine try to surround themselves with people who will love and support her and in the process, support them.
I think Jaineys big aspiration in life is to be somewhat normal, Jeannine said, adding she hopes Jainey can someday have aspects of a normal life, such as a boyfriend and her own apartment.
Don was jokingly adamant they could do without the boyfriend.
Theres not a fairytale ending, Jeannine concluded. What youve got to do is take advantage of the good times when youve got them and just know that the bad times go just as quickly hopefully.
Its all about being hopeful, she said, or else, why would you do it?
You can find more information on Fast through her website, JulieFast.com, or her blog, BipolarHappens.com/bhblog. You can also follow Julie on Twitter at @JulieBipolar or on Facebook under Julie A. Fast.
Visit namicc.org for more information.